Feb 2014 health update

Oh, hello! Now that you’re here I suppose I should tell you about how the Lyme stuff is going. It’s certainly been a minute since I posted a health update, and there’s a lot of update to get through, so hold onto your dendrites and let’s begin the overshare, shall we?

Test results
Recent test results indicate a few interesting things. For instance, I have Lyme Disease, you guys! No brainer, right? Well, it was actually pretty surprising to me that I tested positive after almost a decade of having (and treating) it. It was probably pure wishful thinking, but I half believed that I’d already gotten rid of most of the bacteria and was just dealing with aftermath. Nope. I still have a lot of fighting to do.

Also, it turns out I do not have a genetic mutation that makes my liver terrible at detoxifying my body, and my immune system is only about 25% suppressed right now, which is a huge improvement over the past several years. Overall, my blood looks about as optimistic as can be expected right now, and I’m very pleased about this.

Lyme Treatment
I’ve begun a new treatment regimen with a doctor who practices Integrated Medicine on the other side of the state. At the outset, this requires office visits for treatments every 1-2 weeks. The treatments are designed to kill a ton of Lyme bacteria, parasites, and other pathogens all at once, and they take a heavy toll on my energy reserves and functionality in the short-term, but Lyme Disease is a game where you either become comfortable with strategic risk and sacrifice or you languish even unto death.

For me, this was never going to be a tough choice. I’m a scrapper from way back.

One of my new doctor’s theories about Lyme is that it kind of collaborates with a little-known parasite called protomyxzoa, and you have to treat both together. Because protomyxzoa seems to thrive on dietary fat, I’m eating very little of it these days. This is a 180-degree shift from my previous (and fairly standard) Lyme diet, which was grain-free, low-carb, and completely unrestricted in most fats. For the first time in years, I’m eating gluten-free cereal, toast, and pasta. It is a revelation, and despite the increased pain, decreased mobility, and general difficulty from treatments, my energy levels are better than they’ve been in a long time. Plus, I get to eat stevia-sweetened, dairy-free tapioca pudding while gleefully shouting “Doctor’s orders!”

So right now, the symtoms I’m dealing with on a daily basis are pretty overwhelming. Joint pain and headaches are aggressive, seizures are happening more frequently, inflammation is pronounced, especially all down my spine, cognitive abilities have all taken a hit, and my neuropsychiatric symptoms (the worst of which are anxiety and depression) are keeping me very busy as I try to keep calm and positive, and often fail.

I don’t like to make a big deal about my day-to-day struggles, but lately they interfere entirely with all my efforts to simulate any definition of normal. Socializing is incredibly hard right now. Making it to my part time job has become increasingly impractical. There are a lot of people and activities and places and things that I miss so much right now, and I feel like I’m letting myself and others down, but the ability to interact with them in an appropriate way is desperately elusive. I’m just too sick. I hope that the treatments, however hard they are now, reverse all this in the long run. I believe they will. In the meantime, if I’m acting like an absolute lump around you, or can’t even manage to be around you at all, it’s not you. It’s not even me. It’s my physiological pathology.

The testing, the doctor visits, and the treatments mentioned above would all be inaccessible to me without the donations of my incredible friends and family, and even a few generous strangers. I can’t describe how grateful I am every time I am able to pay for a health expenditure without worrying how I’ll also be able to feed myself or pay rent. I haven’t had that type of peace in a long time, and it was purchased for me entirely by people who care about me, for one reason or another. I can’t think of many gestures that have been so powerful, or meant as much to me. If you donated to my Lyme fund, this is the gift you gave me. Thank you.

A few people have recently asked if I’m still taking donations, and I absolutely am. My medical bills are steep right now, and my long-term coordinating doctor has stopped taking Medicare (or any other insurance) this year, so that fact alone will put any extra money to good use. I am being very frugal with my fund so far, and trying to stretch it as far as possible, but I may need to amp up fundraising efforts again later this year. At that point I’ll probably adjust the goal posted on the fundraising site. As ever, donations are cherished, but never expected.

I’m very, very sick.
I’m trying very, very hard to be less sick.
Too soon to tell yet whether that’s going well or not.
I love you.
I love cereal.
But mostly I love you.

Lyme tip: Cuddling a Pomeranian is always a good palliative care option.

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With a little help from my friends

I’ve been battling Lyme and its cohorts for a long time– almost ten years now– and I’ve tried to do it on my own as much as possible. This means that I’ve tried to be as self-sufficient as I could, paying doctor bills and other medical expenses myself, avoiding complaining whenever I could (this blog notwithstanding; this is my place to gripe when I need to), and trying to be a boon rather than a burden to the incredible people in my life. I suppose I haven’t been able to achieve those goals all the time, but I’ve put a lot of effort into trying. So it’s hard for me to ask for help– especially financial help– but I really need it right now, and I’m finally asking.

It’s insanely expensive to live with Lyme Disease and just prevent oneself from descending into total bedridden misery. It requires a specific diet consisting of cash sent through an industrial woodchipper (seems like), supplements that are essential for any level of functioning (believe me, I’ve pared them down to the essentials), and, of course, the requisite rest time that makes a job– let alone a career– impossible. So lately it’s been tough for me to actually pay for actual treatment on top of those other things, and I’ve been skimping pretty hard on going to the doctor, getting testing I need, and getting the kind of treatments that are pretty solidly supported in the Lyme community, but that Medicare won’t cover any percentage of. And getting treatment is pretty important because I really and truly want to destroy these diseases and everything they hold dear.

I’ve put up this fundraising page at www.youcaring.com/carolynfightslyme in hopes that I can start treating my Lyme and related issues more aggressively and consistently. If you’re able to help me out with a donation I’d greatly appreciate it. All money will go toward much needed medical visits and treatments to help me regain my health. If you’re willing to promote it on blogs, twitter, facebook, tumblr, etc. I’d be so grateful.

Thank you to everyone who’s donated and/or shared so far. My heart keeps melting from all the love and compassion I’m being shown. I feel less alone already, and it’s really lovely.

Special thanks to Bonnie for giving me support and advice on fundraising. She’s awesome, and also has a medical fundraiser in progress.

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Happens a lot.

Sometimes I’ll wake up at 4:00AM and it’ll take me hours to accept there’s no getting around the fact that sleep is closed for business please try again tomorrow. And my body’s like “I don’t know what you want from me it’s not like there wasn’t any sleep at all” and I’m like FINE. GEEZ.

And then eventually I get up and make a depressingly green smoothie out of kale, spinach, and aloe juice.

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Respite, but not nepenthe.

I’ve decided to give up meth(ylene) for a while. Mostly because this is a really bad time for me to have daily meltdowns. Not that I can think of a particularly good time for that kind of thing, but the fact remains that I need a break. I’m staying on the prescription antifungals, though, and in a few days I can revisit the idea of getting back on the fish stuff at a lower dose.

They say mindset is incredibly important in fighting an illness, and I’m usually good at that part of it. Bringing my will to bear on personal matters is kind of my specialty. Sure, I have the occasional dark night of the soul when it feels like I’m suffering the kind of circular punishment meted out by pop songs and Greek gods, but I always get my attitude back in line and continue doing the work. Dietary guidelines, treatments, detox rituals, supplement protocols, exercise: taken all together it’s exhausting to fight, and it gets harder the more futile it feels. Giving up to despair is a luxury I very seldom allow myself.

The psychological fallout from neurotoxic pathogens can be catastrophic, though. I can grin through pain pretty consistently, but it’s harder to stay focused in the face of anxiety and depression. These are the elite forces of the enemy, and they can chip away at my defenses better than anything I’ve faced so far. If the die-offs I’ve been experiencing lately get any worse I’m worried I’ll go from going through the motions without remembering why to not going through the motions at all. But the motions are the fight. The motions are my flashlight on a moonless night.

I’m conflicted because I want these nasties to die as soon as possible, all of them, now now now. But I think a wiser part of me knows I need a break to keep going. And to keep going is the thing. Giving up? One of the few approaches I haven’t tried in all this, but it’s the only one I’m sure won’t work.

Oh, and apparently methylene blue is sometimes used to treat anxiety.

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Adventures in fish medicine

Methylene blue is at once an old malaria medication, a practical joke you can use to turn your friends’ pee blue, a fish medicine, and a weird folksy remedy for candida. In other words, I’m desperate and will try anything, as per usual.

Over the years I’ve tried a number of squirrely remedies for my health issues, with varying results. I’ve taken harrowing doses of salt and baking soda. I’ve experimented with enema preparations ranging from coffee to probiotics to borax (yes, borax). I’ve dropped tinctures imbued with mysterious (alleged) healing vibrations under my tongue and plopped my feet in detoxifying ionic baths. All this? Tip of the ice burg. I don’t expect you to understand this kind of desperation, but I am game to try anything that might help me get a step or two closer to functional. I suppose I feel that I just don’t have that much to lose anymore.

Not that I don’t research these things before I take them, but it’s usually to figure out how much risk I’m running of making things worse, and if the cost in question is better spent on another long shot. Everything is a long shot with Lyme, I’ve discovered: even the most scrupulous volleys of medical orthodoxy.

So it took me a couple days to determine whether or not to see if methylene blue would be a good complement to my standard candida treatment of nystatin and never eating sugar again ever. At the end of that time, I still had no idea if it would help, but it seemed mostly harmless and I was willing to give it a shot.

Methylene blue is a fairly benign substance. In fact, it’s sometimes used in medical settings as an in vivo dye to enhance contrast during surgery. It’s also been given as a placebo– a fairly effective one, since doctors can tell their patients to look out for a change in color in their urine as a sign that their condition is resolving. The LD50 (amount you can give a given population at which 50% will die) for rats is 1180 mg/kg. But apparently it’s pretty ruthless toward fungus. So I decided it was worth a shot. You can even mitigate any hilarious color changes in body fluids by taking vitamin C.

The bottle I bought for six dollars was unambiguously meant for fish. There are fish on the label, and it says it’s for aquariums, but I wasn’t about to let something like that stop me. I added four drops of the very blue, very stainy liquid to a gallon of distilled water, and I’ve been drinking a cup of that every four hours or so (with time off if my body lets me sleep longer than four hours, which is blessedly sometimes). It looks like windex. I think it’s working.

The reason I think it’s working is because the candida die-off crises have ramped up again. Rashes keep appearing and retreating all over my body (luckily, the really ugly ones on my face, which have gotten worse, seem to be there on a more consistent basis). My brain is a kind of vortex of nonsense anxiety. For instance, today, the following things set my heart racing:

  1. The 10-minute drive to the grocery store.
  2. Anybody at the grocery store talking to me.
  3. A spoon that was in a different place than I normally expect spoons to be.
  4. My face. And the way it looks right now (actually, this one is totally valid).
  5. The way the bed sheet I’ve had for several years feels against my skin.
  6. Trying to make any decisions basically at all.
  7. Trying to write this blog entry.
  8. Literally every noise I wasn’t prepared for.
  9. The idea of watching basically any show I could think of on Netflix.
  10. Thinking about the future in any way (also probably valid).

You get the idea. Things are pretty rough at the moment. Again. Or still, I guess. It’s been a rough year. I’m sort of torn between the idea of backing off and and continuing to take the methylene exactly as I have been since it’s obviously doing the job I asked it to do, and I don’t know which is the wiser course (see: decisions are terrifying). In this particular moment I feel like the herx will pass as they always do, and wholesale candida death is actually a really good thing, so I should grit my teeth and keep drinking. I just have to keep laughing at myself and I’ll be okay. I think.

Please send kitten pictures or sedatives or something.

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Candida status: meh.

An interesting thing about killing candida that I’ve noticed every time I’ve pitched war with it is that part of the time I’m ravenous, and the rest of the time the very idea of eating seems repugnant. The past couple days have mostly been of the latter stripe.

It doesn’t help that I can’t eat pizza or pie or macaroni and cheese. Something tells me that even now I’d demolish a plate of macaroni and cheese given half a chance. But my food options are quite limited, and lately I find myself hating all of them with the fire of a thousand suns. On the plus side, I think candida has been a huge exacerbating factor in my hypoglycemia, so right now it’s not the end of the world if I skip a meal. Usually low blood sugar makes me semi-catatonic and fully useless.

Oh, and by the way, I decided to start drinking antifungal fish medicine, and now if I leave the house for more than four hours I’m lugging around a gallon jug of something that looks curiously like windex. I would not make something like this up.

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Candida, we are not friends. :(

Dear 2013, I love you and I accept you for who you are, but can we please be done with the supernumerary health crises? That would be amazing.

Most people who have Lyme disease also have to battle candida overgrowth. They’re kind of a comedy duo, except I’m still trying to figure out where the punchline comes in. Coinfections like bartonella and babesiosis and ehrlichiosis are transmitted via tick bites along with Lyme, but candida is a little different, though it’s often referred to along with the others. Candida is a type of yeast that exists naturally in the human body. In proper amounts it can be helpful, aiding in digestion and containing toxins like heavy metals in the digestive tract. But it’s also opportunistic, and takes tremendous advantage of Lyme’s deleterious effects on the immune system, and the friendly bacteria death that results from Lyme treatment with antibiotics. Things become unbalanced, and then you have candida overgrowth on your hands, and that is a nasty thing.

Hilariously, candida symptoms are a lot like Lyme symptoms, including muscle pain, joint pain, headaches, gastrointestinal issues, anxiety, depression, dizziness, confusion, breathing difficulties, rashes and other skin problems, fatigue, mood swings, and basically every other unpleasant thing you can think of to inflict on a human creature. I think boils may even be involved.

For a while now I’ve thought my own candida issues were managed. I am scrupulous with my diet, probably like a third of my calories come from coconut products (which are supposed to be highly vicious toward candida), and I was on antifungals for about six months straight since the last time I did a course of antibiotics. I assumed (and in retrospect, I admit that this was pathologically blithe) that as long as I continued with clean eating I’d be fine. So when my antifungal prescription ran out I didn’t bother calling my doctor for more, and had also started experimenting with eating some low-sugar fruit. It was about a month before I started getting nausea after eating, and decided to be very clever and get back on antifungals and a couple other, complementary candida-killers. And of course I gave up the fruit idea as patent folly.

That’s about when my entire world melted. Er, that’s what it felt like, at least. A day or so after I started the meds I had a weird emotional breakdown that I couldn’t really figure out. The next day I could barely move and was too nauseated to eat much of anything, and food aversions cropped up like the rashes that were suddenly blotching up my face. Sleeping was suddenly no longer a thing I did. The third day I was dizzy, incredibly anxious, and started wondering if I’d poisoned myself somehow. Everything hurt and everything about the world seemed fundamentally wrong. I felt oddly delirious and detached from everything; I found myself shaking my head with fevered but aimless passion far more than usual, because honestly I almost never do that.

In fighting Lyme and candida and mold (so basically all my major health challenges), one experiences Jarisch-Herxheimer or die-off reactions. This is where you kill a pathogen and it dumps every toxin it ever possessed or thought of into your body and you feel a great deal worse before you can even dream of feeling better. This only happens with certain diseases; I just have a special gift for contracting those in particular. And this die-off phenomenon is what was happening; this was just one of the worst ones I’ve ever dealt with. Candida was dying inside me, and its death throes were making me crazy and sick and not entirely sure I wasn’t also dying on a macro level.

Other things that I’ve been dealing with lately that may be (in varying probabilities) related to candida include the serious increases I’ve been seeing in fatigue and pain recently, and increased hypoglycemia issues. The internet (which is never wrong when it comes to byzantine health issues, RIGHT?) tells me that insomnia can be a common symptom too. So maybe once I get this candida mischief managed life will become a little less harrowing. I’m marginally optimistic and very hopeful that this is the case.

Fighting systemic candida, like fighting Lyme, is tricky. But I have a great many tricks up my sleeve and tinctures in my armory. In over a week of fighting candida with great fervor, the herxing seems to be letting up a little, and I feel like I’m making progress. I’m no seer, but I have a feeling there are a lot of probiotics, and very little fruit, in my future. And maybe a respite from the horrific health streak I’ve been having lately? Please?

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Air bags are operational.

My chest x-ray results came back, and it turns out my lungs are normal. I don’t have pulmonary sarcoidosis. Hooray! It’s a no-lung-fungus party up in here!

This is mostly great. I don’t need more to be sick with, surely. But part of me was heartened by the possibility that some of my symptoms were caused by something that might be easier to treat than a shape-shifting bacterial manifestation of all the misery in the world.

The breathing issues that persist could easily be related to Lyme, or babesiosis, a Lyme coinfection I’ve tested positive for, or systemic candida, a natural result of inhibited immune function and prolonged antibiotic use. So I’m back to looking at my original health issues without a clear direction on how to try to treat them next. At least life is simpler this way? I guess? Overall, I’m glad I don’t have fungus in my lungs. I think I can confidently call that a good thing.

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Endorphins and entropy

It’s a little counterintuitive on the macro level, but light-to-moderate exercise really does make me, a chronically fatigued and in-pain spoon-counter, feel better most of the time. I don’t claim to say this is a universal truth that applies to lymies and spoonies everywhere, but it’s a useful thing for me to try to remember on those days when moving whatsoever sounds like an idea to rival New Coke for idiocy. Those are the days I have to force myself to do something.

There was once a time when doing something on an off day amounted to kickboxing for 45 minutes instead of an hour and a half. I was that girl. But now I feel pretty fancy when I drag my carcass out of bed and bounce on my trampoline for an entire song, or stand up to do my breathing exercises, or (when things are really bad) do them at all. Because my body hurts. It hurts when I don’t move, but it hurts even more when I do.

But lymphatic flow! Neurotransmitters! Hormonal balance! Reasons! Lazy’s siren song features lyrics that lie. I get that. So I try for something, even when nothing seems more reasonable and pleasant.

These days, “exercise” usually means breathing, walking, trampoline, or yoga, and I’ve basically put them in order of probability if I’m feeling horrid. Although breathing isn’t exactly easy for me all the time (allergies, muscle pain, possible lung granulomas), it’s something I can usually manage to do. The giveaway on this is the fact that I’m still alive. Walking, with or without cane, is the second easiest. I bought a mini trampoline a while ago, and it’s surprisingly useful. It’s easy on my joints, apparently amazing for moving lymph; I just have to be careful not to overdo it because it seems to work a lot of muscles, and while I can deal with some post-workout soreness, it can easily compound on me and make my life very difficult. Yoga requires the most investment in health and energy up-front, so I haven’t been able to do much of it lately, but it has an incredible payoff as long as I’m having a good enough day to go for it, and I’m careful.

For years I self-identified as an endorphin addict; working out was my anchor, my sanity, my hobby. And now the thing that kept me centered and happy every day is no longer what it once was. It’s grueling, painful, a reminder that my body is a testament to entropy. I guess that’s true of every body, but mine is really sort of overenthusiastic about it.

I liked taking kung fu more than I like taking pills, dammit.

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The pain issue…

It’s been about eight and a half years since I’ve had a doctor willing to work with me on pain management. This has been very, very difficult because Lyme disease IS inflammation (among other things) and, to oversimplify, inflammation IS pain. Which means I’m in pain a lot, in case that didn’t come across.

When you have Lyme, finding a doctor to work with is a bit of a nightmare. Most doctors believe it’s a cut-and-dried infection, easily curable with a two-week course of antibiotics. This, however, is not most Lyme patients’ experience, especially if we weren’t diagnosed and treated very promptly (and even if we were, more and more evidence is mounting that a month is safer, or even a quick and decisive I.V. antibiotic regimen). The doctors I’ve been working with are necessarily alternative; simply by diagnosing me and treating me they’re running against mainstream medical ideas about this disease. But, while they’re certainly not stingy with the antibiotics, pain management has been more along the lines of trying to sell me supplements (I don’t like or trust the fact that these doctors always seem to try to sell me supplements, but it seems to be inevitable) meant to reduce inflammation, etc. than prescribing pain medication.

Sometimes, though, a girl needs pain medication. I am tough. Sometimes I blow my own mind with the sheer volume of unpleasant things I’m able to weather. But still, there are days when I’m completely incapacitated by pain, and they’re not exactly rare. I will admit, I want access to something fast and powerful and not at all alternative at those times. As someone who doesn’t drink, doesn’t smoke, and has never abused anything prescribed to me in the history of ever, I think I should get it. Hell, I’ve eschewed all gluten and dairy for almost two years now. Don’t even step to me and question my willpower; it should have apprentices. But it’s really hard to convince a doctor of that, apparently.

And I’ve figured all along that it isn’t really worth it to try. You’d think that after your life has done a swan dive into poverty, disability, and constant pain you’d run out of tosses to give about whether some doctor somewhere writes “drug seeker” on your chart. But that’s not exactly true. There’s a certain amount of vulnerability and emotional energy involved in telling a doctor exactly how difficult things are for you and asking for the kind of help you’ve learned to believe they’re unlikely to give. It’s demoralizing to keep hemorrhaging hope and money trying new medications that simply don’t work. But the pain has been so bad these past few months.

So I’ve been looking for new pain management options lately. There are a lot of medications that aren’t painkillers, per se, but fiddle with one’s neurology to prevent different kinds of pain. These, obviously, are a lot easier to get ahold of than, say, opiates. I was only determined that I would not try Lyrica, since I’ve heard and read so many reports of terrible side effects, one of which is depression, something I’ve been struggling a lot with over the past year anyway. So I got brand new scripts for Ibuprofen 600s (which on a bad day is like restraining a mastodon with dental floss, but it ends up being much cheaper than buying it over-the-counter) and Neurontin, which I later learned is an older sibling to Lyrica.

Once I realized exactly what I’d been prescribed, I wasn’t exactly in a tizzy to start it. But there are several reasons I decided to try the Neurontin after the kind of soul-searching that only arises from excruciating headache pain:

  1. To be sporting.
  2. Naked desperation.
  3. I realized that the dosage of Neurontin prescribed was comparatively tiny, about one tenth per day of what seemed like a modest intake for the average internet denizen. Surely this would minimize the potentional side effects. Surely! Wouldn’t it?
  4. I was really in a rather lot of pain.

So I swallowed 100mg of anticonvulsant and hoped for the best. An hour or so later, the best was almost certainly not happening. That minuscule amount of medication I’d taken was giving me a pronounced anxiety attack. I wasn’t panicking, exactly, but everything seemed wrong and upsetting– everything. The moon made me want to cry, not in an “isn’t this so poetic and beautiful” way, but in a strange, new “the existence of this moon is hugely frightening and unsatisfactory to me right now, and I have no idea why” way. I couldn’t read. I couldn’t listen to music. I couldn’t do anything without feeling miserable and slightly paranoid. The new med also brought on considerable nausea. All this, without an iota of pain relief. It felt like my headache may have actually gotten worse, but it could have been the baseless terror talking.

Is it still called a “side effect” if the main effect isn’t actually happening? Never taking Neurontin again, even if it begs me. And my pain situation remains unadjusted. Not ideal.

I kind of just wish someone would give me weapons grade painkillers and trust me to be responsible and sane about them. Because I would be.

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