It feels like I’m talking about someone else’s life, sometimes…

So, in my last post, I said I’d give myself another two weeks off treatment and then re-evaluate my state of health to see whether or not I should restart treatment for Lyme disease. Something happened to help me make that decision.

I got an ear infection. Just a minor bacterial one which I get about once a year if I’m not already on antibiotics at the time. (Well, at least compared to a VIRAL ear infection, they’re minor.) I’m a miniature pharmacy so I already had the Z-pack needed to treat it.

I took one pill (and you’re supposed to take two at first, but I didn’t think that’d be smart for me…I was right) and spent that night feeling unimaginably ill while trying not to have a mental breakdown.

Fellow Lymies already know this, but: Zithro is the cousin of the medication I’ve been on (Biaxin) to treat Lyme disease, and also a potent treatment option in itself, so taking it affected a lot more than just trying to help my ear. There was fever, chills, constant shaking, dizziness, numbness, nausea, and a host of other things, like not being able to remember my best friend’s name (?!?!). But the real “kicker” was that I felt that way from just one pill

After being off meds for a month and a half, I can’t even handle one pill. :|

I can only handle half-a-pill, which is less than a child’s dose, and I can only hope it will be enough to cure my ear infection… But it’s definitely not enough to treat my disease. If anything, these tiny half-doses may keep things from progressing too quickly, but will also make me a target for drug-resistant bacteria, and then talk about being in a mess…!

This does take away the choice (mostly) of whether to begin treatment again or not, because it’s obvious I physically cannot do it, and mentally, I am still so, so tired.

Toward the middle of November, I thought I was doing better. I left the house three times in a week, and (not the same days, but) I had three consecutive days with no pain. So I thought I was getting over the relapse, until this happened. I was just a little crushed… But it is what it is, right?

I’m not sure what’s going to happen from here. My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. (And the Lyme disease is stage 3, meaning it’s.. everywhere. And it does not wait for you to be able to handle antibiotics.) But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.

If not, well… C’est la vie, que sera sera, and all that jazz.

 

I stopped doing the ability scale checkpoints because they are a reminder of how I haven’t made much progress since finishing bartonella treatment. Now, I don’t want to make that sound mediocre… If that disease was still present, I wouldn’t even have the luxury of wondering whether or not handling treatment was an option; I’d just be dying very quickly again!

But the truth is still that I kept waiting for a stable period to make an assessment, and that has yet to happen. I repeatedly had to pause treatment, take such-and-such different medication, take this-and-that medication to balance out the first one, then relapse, recovery, relapse again, and whatever progress I did make, I just kept going downhill again.

I made my last checkpoint at the beginning of this year and I can honestly say I am still at that place, in general, with the obvious adjustment that my symptoms are more severe for the time being due to relapse. But at least I am not any worse than that. I like being able to breathe and walk on most my days. And I do think I am a bit recovered from this relapse that began at the beginning of October.

I can handle longer periods of light, I can be out of bed more, and I have longer stretches with less pain. The translation of that is: I can usually use technology for several hours a day instead of bursts of twenty-minutes until I couldn’t bear it anymore; I make it out of my room several times a day instead of barely once, and sometimes I can leave the house; and my “usual” needed dose of pain medication is once a day, instead of always twice a day…and I have random days where I don’t need any at all. So,

  1. without intervention of medicines like caffeine (which is the only thing that enables me to do things like take a bath, or have a stable blood pressure), or pain medications (which are the only reason I can be active at all); and
  2. with 100% being completely recovered,

I am currently at 15% physical ability and 20% cognitive ability. As we all know, there are better days and worse days, but in general…

And with 100% completely symptom-free, I am at 10% symptom severity. Though I think the chart should be in reverse for that section, because initially “10% symptom severity” sounds as if I only have symptoms 10% of the time, and it’s the exact opposite:

“Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.”

 

Thankfully I do have medications to help me get through this difficult time, and all the support in the world from my friends, fellow spoonies, and doctors, about whatever decision I have to make. (My family unfortunately has no idea of the magnitude of this… Right now, I’m not sure I’d want them to know, until I can give them an idea of what we’re looking at…) And I have an appointment with a pain management specialist next week, and I see my Lyme disease specialist on the twelfth. So this is where I am at!

a rainbow at night

(P.S. – Today is my 2-year WordPress Anniversary!! I never imagined so many people would be helped by the words I share. Thank you, all. Stay strong with me!!)

Relapse Journey: Is Choosing Treatment Still Choosing Life?

Here, let me type this so you all won’t think I live in a happy-land bubble. (No, that’s not really why I’m typing this, but it’ll probably confirm it unintentionally.)

This relapse has sent me on quite a ride, physically and emotionally. I did need to take the full two weeks off of treatment, and I’ve only been back on treatment one week before hitting the point of “why am I doing this,” because I’m still relapsed, feel like hell, and I can’t handle this. I’m generally better than I was during the initial crash, but I haven’t bounced back from that point, yet. And the pain…

I have been on twice my usual pain medications, every day, for almost the entire past three weeks. I think there was maybe one day I was okay without anything (and I really wish I knew how it happened!). This has mostly resulted in me subjecting myself to psychological torment over needing them. I used to be able to take breaks from ibuprofen, for the well-being of my stomach; now I cannot. I used to be able to take Lortab (vicodin, as most people know it) once or twice a week to get through the worst of things; now the pain is so bad I cannot function without taking it daily.

Even typing that–that I can’t function without painkillers right now–makes me feel guilty!

In my head, all I hear are family members who took them, who REALLY DIDN’T need them and therefore think no one else actually does, either; other spoonies who have said incomprehensible things like “this suffering is unbearable but I ‘don’t believe in’ taking pain medication”; and society saying that anyone who takes Vicodin is probably one step away from being House, MD during one of the really bad rehab episodes. So yes, cue the shame over needing something to make it through the day, when I previously could just tough it out.

I’ve done a lot of thinking about this, dissecting it from various angles… It’s like I feel I am somehow responsible for needing it, as if I did something to make this happen instead of realizing my body is severely ill. Well…

My favourite quote is the African proverb,

“When there is no enemy within, the enemies outside cannot hurt you.”

Which translates to, someone’s ill-conceived judgement of you is not going to hurt you unless you actually believe what they say to be true. I even wrote it on my mirror in dry erase marker (“no enemy within”) a few months ago, to remind me of it. This helped me realize that it wasn’t what I thought everyone else was thinking that bothered me–it was what I was thinking about myself. I was the one condemning me, not anyone else.

The people who love me were actually very glad I had adequate pain relief! It was (is) the only way they’ve gotten to see or hear from me at all the past three weeks!

It all boils down to a loss of control, I think.

  • Maybe I’m just not ready to accept that I’m still under the effects of this relapse and haven’t bounced back from it yet.

  • Maybe I’m scared my disease is worsening or my Lyme treatment isn’t working or has done all that it can do.

  • Maybe I’m uneasy because I’ve never been dependent on a controlled substance before.

  • Maybe I’m not ready to accept that I’m a chronic pain patient again.

  • Maybe it reminds me that things WILL eventually get worse.

  • Maybe I’m scared that there is no turning back from this point (even though there probably is).

These are the ways relapsing makes you feel. I’m frustrated over my Lyme treatment, and all these medicines, and I’m just.. so tired of all this. I’m so tired of this fight to prolong my life.

Sometimes I just want to stop taking everything and see how far I make it. But I also feel that’d be almost the same as suicide.

I just think, Well, if I’m going to keep going downhill, at least let me not fight/make it happen even quicker; it’d be better to enjoy what I still have than waste what’s left on a battle I can’t win. My doctor once told me that, even. If the treatment is as bad as the disease itself, to weigh my options. Treatment for chronic Lyme disease is like chemotherapy for cancer; don’t let anyone tell you differently. And even if you get relatively symptom-free, it can always come back. My old bartonella infection could always come back, even.

So for now, I’m returning to once-a-day Biaxin for the Lyme disease and Mycoplasma treatment. It’s either I go back to that, or I stop treatment completely. I’m emotionally worn out from getting better and then relapsing, with each event being worse than the one before it. (Quite a predicament to be in when my subset of myalgic encephalomyelitis is relapse-remitting–that’s pretty much all that my future holds!)

 

This might all seem like a 180 from my last post, but it’s not. Maybe I had to express how grateful I am to be alive, so I wouldn’t think this (what I’m feeling) was because I wasn’t… Because I am grateful, and all of this isn’t because I’m not.

My being thankful to be alive and also tired of fighting are not mutually exclusive.

I am so happy to still be here, to have all these things that help me, and people who love me… And sometimes, I just want that to be enough. Sometimes, I just want to embrace my accommodations, enjoy what I have, what life I have left, and live out the rest of my days in as much peace as possible, without the fighting to stay alive part every day, without the medications that are keeping one disease from progressing but which may be setting me up for worser things in the future.

The choice is ultimately mine, I know.

I don’t often say this, and it might be a bit crude, but I should get an award for not offing myself yet. I have friends with this disease who have tried, and friends who have succeeded, and I don’t blame them at all. No, I don’t blame them at all, in the face of a disease that takes you oh-so-slowly. To hold on when there is little hope of a cure, and you know what you’ll face later on: that is a true survivor, no matter what the disease does to you.

Well, actually, I did get an award; a blog award, and I’ll talk about that… In my next post. Along with some facts about the me, the person behind the blog.

 

For others going through a relapse right now, I offer you this:

What is a relapse?
It is an unexpected deterioration in the condition of a sick person after partial recovery.

Conclusion: A little Allegory
Imagine, if you can, a tranquil English breakfast table. The kettle steams, the electric toaster is in action, but someone forgets to adjust the thermostat. Suddenly the smoke alarm shrills from above and is wrenched from its socket before upsetting the neighbours.

Despite our wonderful self-regulating kitchen gadgetry, all is in chaos! In future, pay careful attention to your body’s thermostat, your daily variation in energy and activity and remain grateful for the commotion set up by your immunological stress alarm if it prevents another set-back. Good luck!

http://www.tymestrust.org/pdfs/nosmoke.pdf

a rainbow at night

Disclaimer: I’m not suicidal.

ARAN makes her first real post in months!

Something I try to do with this blog is make sure it makes sense and follows some semblance of “why yes I DO have a thought process,” but tending to either of those things is going to make this blog entry impossible, and I really need to write. So I’m sorry, people who like sentence structure and who like to translate my entries into their native tongue.

 

My birthday was in August. And it was incredible. Full of love from friends and family and the amazing gift that I was alive to enjoy it. I thanked my Lyme doctor for helping save my life, because without his aid I know I wouldn’t have made it. The whole celebration affair took two days to get through because I didn’t want to exhaust myself–I tried!–but let’s just say, next year I shall ask for more assistance, especially in opening gifts because I did the closest thing possible to arm-murder for someone with M.E. The eustress still affected me profoundly, and the muscle relapse I experienced took me weeks to recover from. By mid-September I did finally get to a place where I was okay enough to start typing, replying to e-mails, et cetera, albeit at a much-reduced level. I think that’s when I made my last entry… Anyway.

Since my last actual update I have been “officially” diagnosed with vasculitis, upped my Biaxin dose, and had to stop everything completely.

 

After a necessary car ride (read as: evacuation) put me in the sunlight for eight hours, my sporadically-present vasculitis-of-the-past-ten-years went into overdrive and has been bothering me daily, often severely, ever since. I have to avoid all sunlight and any temperature change…which I always have to do, but right now it’s even more important. I did get tests to see if anything autoimmune had been triggered, but the tests, ANA and the relatives, were all normal, so that’s good. I got the diagnosis of inflammatory vasculitis on the 6th of September, which ironically was two days after upping my Biaxin to twice daily instead of once daily, but the Biaxin was unrelated, since the problems began days earlier with all that sun exposure. My PCP told me all the weird quirks I’d been having–the INTENSE dizzy spells, the blurred vision, that the main vascular problems were in my hands and feet–were all related. She said it starts in the small blood vessels–ears, eyes, extremities–and spreads from there, and to manage it with ibuprofen, which for now, mostly works.

We want to avoid going on steroids if we can, because of how it suppresses the immune system… But I’ve been off and on Nasonex (an inhaled corticosteroid for sinus problems; I don’t have allergies) and it’s such a catch-22. I always feel better when I’m on it, but it also messes with my immune system so that other problems act up. Sigh.

 

For the most part I have been feeling GREAT with the twice daily Biaxin, but when I’m down, I’m really down. I have no idea what to say about my general health status, otherwise. :\ I always get a bad flare at the beginning of the month because this is one of the bug cycles (I think the Mycoplasma, but maybe the Lyme–I have no idea, I just know it’s not related to my menses because that has no reliable pattern, and hasn’t for years). Well, this month’s flare was absolutely terrible because of being on the doubled antibiotic dosage–”herxapalooza,” as one of my friends calls it.

When I was on Zithro (biaxin’s cousin), there would be one day a month I’d have to stop my antibiotics and let the herx die down, lest I end up it the emergency room. I came very close to going this month, not because of the herx itself, but because of a Migraine that was almost completely resistant to treatment. All I had at my house was off-brand medicine and name-brand Treximet, the latter of which  I cannot take with my type of migraine (which I DID NOT KNOW–need to discuss this with my new neuro!). So that was bad. Bad bad. The aura began with an awful episode of Alice in Wonderland Syndrome on Friday (Sept 28th) and the Migraine began Sunday (Sept 30th). Two days later, that was gone, but I have been sicker than sick ever since the whole thing started.

I have stopped ALL of my antibiotics in an attempt to recover, and I’m planning to resume them Monday if I’m able. If not, I’ll give it another week like I sometimes have to do. It’s been four straight months since having to take any kind of break, so that’s good. I hope it’s just the herxing (my liver is fine, by the way!), because this is a little frightening.

I haven’t needed my wheelchair in months, so I put it in the closet. Then yesterday I went to stand up and almost went to the floor. I’ve had NO trouble walking in months. Now my legs are very weak. It just hits me in “episodes”–one part of the day I’ll be sort-of okay; the rest, I am useless.  This would make sense if I were currently on antibiotics, but I am not. I have been sleeping a ton, and in bed all day regardless, only getting up for the essentials like restroom. And the pain… Oh, the pain. A day or two ago–they all blend together at the moment–I couldn’t so much as roll over in bed without vicodin. The headache phase (as that Migraine went on to irritate every surrounding nerve) has died down for the most part, but now I face exhaustion, flu-like sickness, numbness in my right leg leg and foot, a bizarre action-related tremor in my left hand/arm that has actually been progressing instead of going away… I am hydrated but my blood pressure is poor, I am resting but my heart is weak… My heart has felt weaker the past several weeks, at random. I don’t know what that’s about (side effect of doubled Biaxin?) but my next cardio appointment is in November.

It’s just such a drastic change, and I was doing perfectly fine (relatively speaking) on the doubled dose of antibiotics until this hit… And despite being off of them, it doesn’t appear to be getting better yet, which is concerning when I’ve literally spent the past week in bed and usually this combination lends to me feeling better… Or at least, when it’s M.E.-related, this lends to me feeling better. I suppose, with that in mind, I should stop thinking of it in those terms, because even though the majority of my troubles the past month-and-a-half have been M.E.-related and those ARE improved with rest, these problems I now face probably are not M.E.-related, and therefore there’s no sense in thinking rest will help them. Maybe I’m rushing things, or being impatient, I just wonder what happened that I’m taking so long to recover, and I hope this will all pass over without me being forced into a lower state of fucntioning in the mean time.

 

Three hours after I typed this I was able to come back and fix it up a little, so it’s not too bad… But yes, as to my absence…! I have been doing mostly okay, seemingly doing much better–even starting to prepare my own meals!–until “this” happened.

a rainbow at night

On livers and Lyme and dystonia and…another antibiotic break.

On Thursday, the 5th of April, I upped the minocycline to 200mg a day. For the next few days I only noticed a greater need for sleep. Since starting the minocycline in general, I had a greater need for lortab/vicodin (at least once a day) to deal with the head and neck pain (read as: severe), so that also got worse temporarily before tapering off into less-severe pain.

Mostly because of this, my sinuses were really bothering me (hydrocodone causes a release of histamine, and when you stop it, then you can get a rebound release of it), so I had to take Nasonex for several days–it helped so much, and by days Three and Four of being on it, I was outside taking pictures of flowers!! I figure it might have been helping subdue some of the herxing because of its immunosuppressive tendencies. After day Four I was able to stop that, too, since my sinuses had returned to normal.

Then on the 9th I got a fax from my doctor saying my liver enzymes were very elevated. This, after them being perfectly normal two weeks earlier, and me still taking milk thistle three times a day!! I was upset, but I had to stop all antibiotics again.

I don’t know if it was from not taking my antibiotics, beginning that morning when I got the fax, or rebound inflammation from stopping the Nasonex, but I felt absolutely horrid starting that day, and did every day after/have every day since. We’re talking complete flu-feeling and just.. awful. It was the metaphorical equivalent of hitting a bear over the head once, and then standing there staring at it. Lyme is a very, very angry bear. To further my physical suffering, a few days later my Lyme flare up began! D:

And then an old Lyme-related friend came to visit me: Dystonia.

(I tried to kick it out–you must mean the house down the street, no rainbows at night, here!–but, that didn’t work.)

And not just dystonia, but that special brand of dystonia with parkinsonism thrown in there that makes me unable to walk, that makes everything on my left side either fail and freeze, or flail and dance. (Why does Lyme like the left side so much? No one can figure it out, not even the doctors.) It began on the 14th, when I got out of bed, took two steps, and my left leg decided it wanted nothing to do with this “walking” business. Luckily, there are wheelchairs. I still had a lot of movement problems even wheeling about the house, but standing up makes it so much worse in general, even if I’m not trying to walk. It got worse on the 15th and 16th…

I wish I could adequately describe what this type of movement disorder is like. A dear friend of mine in Pennsylvania has the exact same problems I do (also hypertonia, also brain lesions) and despite telling her this, she really didn’t “get” that we were having the same issues or that I really did understand what she meant when she explained them! Then one day I guess I explained it pretty well, and she understood, and didn’t feel so alone. I wish all of us Lymies could record ourselves having these problems and put them on YouTube to give each other some comfort that we’re not alone…but I don’t know how many would go through with it. I know I don’t want people to see me when I’m having these problems; like most, I’d rather just wait it out! :\

Anyway. So a typical “episode” of this happening might start with me attempting to walk. A varying amount of time passes before I slow dramatically and then my left leg will start to drag. If I stand in one place it often curls inward. If I try to walk it is essentially frozen, or moves so little that I might end up walking on the tips of my toes to compensate. Something around my hip/thigh happens and my leg jerks upward, causing me to simultaneously fall forward, often twisting my neck to one side at the same time “for some reason.” I don’t always have to be walking for this to occur. I know low oxygen (or at least low oxygen ratio) makes this worse, because supplemental oxygen always helped in the past.

“A major principle of body movement is that all muscles have an opposing muscle. Movement is possible not just because one muscle becomes more active, but because the opposing muscle relaxes. …Rigidity comes about when, in response to signals from the brain, the delicate balance of opposing muscles is disturbed. The muscles remain constantly tensed and contracted so that the person aches or feels stiff or weak.”

Other times it involves my face and neck–like an episode of Bell’s Palsy that isn’t so much the nerves (I don’t think, at least) as it is the muscles contracting, and causing issues like facial grimacing, an inability to open my left eye all the way (lots of times I cannot look upwards, which is truly disturbing–I don’t think this is dystonia but I wanted to mention it anyway), and my tongue might tremor, etc.

This time, much to my dismay, my arms were involved, interferring with my typing. :( It wasn’t the M.E., and it wasn’t the neuropathy that’s started to invade my arms causing the weakness, but something different. (It’s probably impossible for me to put the difference into words, but I know what that feels like.) They were doing the same thing my legs did–gradually getting slower and slower and it was as if the nerves were failing to send adequate signals, where in my head I was giving them the action I wanted them to perform but everything was going very..very…..slow…… :| (But not the paralysis and takes-five-days-to-recover like the M.E. muscle failure; this is far more neurological.)

And then the 17th happened. Or rather, the night of the 16th when I tried to sleep. I spent all night waking up every hour going “omg I’m going to vomit” and “omg why is everything moving” and then when I woke up once at 7am, the back of my head was killing me (figure of speech, of course). And thus began the cycle of the next five days. But at least after about the 18th, the dystonia and parkinsonism got better and I could walk again. Oh, the things I had happen every morning… One morning was like I described above, for another it was all I could do just to roll onto my back and take medicine, another was gastrointestinal nerve problems that immobilized me in pain, then to add insult to injury, I woke up dehydrated, because I usually do during Lyme flares; it has been an incredibly difficult couple of weeks! What got me through it was knowing that it would pass.

And it did.

The 22nd I felt good enough to take a ride to the city. Well, with the help of adequate medication for pain and inflammation. Right now I’m waiting for a supplement to arrive (tomorrow), so I can resume antibiotics.

I can’t thank God enough for such an absolutely amazing doctor to get me through all of this. Especially after so many years of people who didn’t know what they were doing, no idea how to help me, or just passing me around from doctor to doctor. (From primary to cardiologoist to neurologist to immunologist to infectious disease specialist to another cardiologist to another neurologist to a movement disorder specialist to…) I feel safe in God’s hands and my LLMD’s experience to get me better. He called and told me this herb collection to order for my liver, called Liver Chi. He says he has patients with Lyme-induced MS who are on triple IV antibiotics, their liver enzymes inevitably going high, but who can’t stop treatment for fear of their disease progressing. He thinks I am in that group with the rate that my symptoms progress the moment I stop antibiotics. And if this supplement (a mix of chinese herbs) has been able to bring theirs back down to normal, on all of those antibiotics, I’m sure it can help me get back in treatment! So he said to take a two-week break (which I have), and.. essentially, don’t wait, get the herbs, and resume treatment whenever I got them. And of course keep checking my enzymes.

 

I’ve been doing a lot of art lately to help me cope, so here are a few pieces. Three photos, three paintings. You can click on “Permalink” when they open in the gallery, to read more about any piece you want.

Things I want to add into this post but have no idea how:

  • Ibuprofen always helps. Always.
  • My PCP says I should tell my cardiologist about the fact that I feel like I’m going to pass out when I take a deep breath–I actually had to lie on the examining table this time, which is new. My first guess is my usual lack of my heart rate variability and the fact that it’s supposed to vary when you inhale deeply, but mine often doesn’t… But that’s autonomic neuropathy for you.

a rainbow at night

Lyme time again? And rambles about movement disorders.

It’s been a while since I’ve had the Beginning of the Month Lyme Flare, but I suspect due to stopping the Azithromycin, it’s making a small comeback. No worries, though–I doubt it’ll have time to do much damage before I start Tindamax next month… It’s December now! Yay!

I love the holiday season. Everyone is so giving, and people put forth so much effort to those who are not as fortunate, by means of donations and toys and food.

Two days ago I got a very sudden, very severe headache. I knew when it hit me that it was going to be one of the bad ones. I needed an entire Vicodin and 400 mg of ibuprofen to even touch it–usually I only need half of that! Day two required one additional dose, then today I’ve been okay without medicine, though I still get bursts of pain randomly.

Also for a couple days I’ve had the facial grimacing thing happening–where my face tends to droop and pull toward the left. I have very limited use of my left arm for reasons of neurological-based weakness. Yesterday my walk starting to.. well, where my left leg began to drag and I almost had a tip-toe gait, again. I have been feeling better this evening, but the dragging leg is still happening. I’ve had tremor in both arms, but obviously moreso in my left.

I never bothered to see that movement disorder specialist since everything was exaggerated because of the herxing. My neurologist confirmed dystonia, but as far as what kind, I have no idea.  Reading more about dystonia and hypertonia (so much overlap) and its relationship to upper motor neuron lesions, has left me wondering if some of these issues will ever leave, or just be a remnant that appears whenever my body and brain are stressed? A friend of mine has been diagnosed with hypertonia and spasticity, and while she also has a random spot on her MRI, they never thought to make any connection with it in her, either. Then again I don’t know what area of the brain hers is in, nor the size, nor if she has a positive pronator drift. But the coincidence made me research a lot; I love learning.

What I can draw from it in my one day of Googling is,

Lyme disease and/or Bartonella → Upper Moton Neuron Lesion (w/ Positive Pronator Drift) → Spasticity → Hypertonia → Rigidity, and/or Dystonia, and/or Parkinsonism, and/or Dystonic Hypertonia (and probably a ton of other things)

In other words, an infection leading to a brain lesion that leads to various movement disorders. (Everything there can have more than one cause and result, don’t misinterpret that.) I just wonder if it’s permanent? Both my friend and I have experienced that, even when we feel better, we experience progressive neurological deficits the more physically active we are… I simply wonder whether or not that’s going to go away, or if it’s related to the spots on our brains, and thus it.. probably won’t. It always gets worse when oxygen levels are out of balance… So if my friend’s problems are anything like mine then I assume the SPECT scan she’s having will show lots of abnormality, which should serve as a basis of proof for her disability case. It’s ridiculous that someone who can only barely get out of bed on most days and makes emergency room visits every few months, has to prove disability even when all infection tests show positive… :\

I should be better in a couple more days.

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.]

More rashes?

So first off, HEADACHE TIME. My eyes hurt and the front of my head hurts, but no sound sensitivity. I’ve been using the wheelchair off-and-on the past few days to make things a little easier on myself–whether it’s the joint pain or the blood pressure or just being out of breath at the time, lots of things are making it difficult to get around right now! It’s always easier by evening, though.

After some chatting on the support groups it would seem that my persisting joint pain might actually be bartonella, but the really severe episodes I have where I wake up unable to move my knees might still be Lyme. I haven’t had other instances of that, though I am now generally arthritis-y in every joint, particularly my hips, which is.. not typically Lyme-y to hang around like that? I can’t remember ever having this before. I’ll keep track of it but I’m glad I’m not the only one to experience this during treatment.

But what has startled me to make this post isn’t to rant about the joint pain, which I’ve accepted as a random part of the Bactrim that’s hopefully killing the bugs. No, this is Tuesday, so mid-week flare (previously the Saturday/weekend blues) is upon me. Right now I have another ankle rash. It’s an itchy, slightly rasied red area, with clusters of red pinpricks in it. I also have some other spots on my lower legs, that do not itch, and the red dots on my feet are back as I feared they might do. They’ve been appearing slightly the past few days–so whether it’s Lyme or bart or any combination of things, something is definitely active within me right now. These also do not itch, but some of them are much more prominent/noticable than the last time they sprung up. There are fewer of them, though?

This ankle-cluster-rash is the exact same thing I got a couple weeks before the whole tree thing happened, BEFORE I got re-exposure to the fleas, so I’m more likely to believe it’s something I already had than it being the result of mysterious-new-flea-infection. I don’t know what to make of it. About two weeks ago I got a similar bump-thing above my left knee that looked like a scratchmark, but it wasn’t? It gradually faded away as all of these do.

What exactly is going on, here? Is this another case of “one infection is down so another is going to pop up”? Or is this just another strain/another side of the bartonella infections I’m trying so desperately to eradicate? I’m halfway tempted to make an appointment with my (not-Lyme Literate but still Open-Minded) infectious disease specialist and see what he thinks might be going on. If it were a med reaction, it’d be consistent, wouldn’t it? Not just randomly happen when I’m also experiencing bug-symptoms?

This is confusing. :\

a rainbow at night

Is this some form of optic neuritis? Also, lots of improvements!

My eyes hurt. My eyes hurt a lot, behind the sockets, but mostly when I move them… Well, try to move them, because I really can’t due to the pain, and specifically, it’s just my right eye. I’m also terribly photosensitive but that should be a given, right? (Sunglasses are your friend. So is the screen brightness adjustor on your computer.) I haven’t had this happened in months; it used to occur minorly as a bartonella symptom. But I don’t know WHAT this is, because it’s never been this severe nor lasted as long. It only responds to high doses of ibuprofen–not even entire Vicodin pills (I only ever need half at a time) give me any relief. This is the third day of it, and it’s starting to finally ease up. Yesterday the front of my skull also hurt, and now I have some type of headache in my neck, but that might be unrelated since the middle of the week is approaching (middle-week blues!). I’m very glad to be switching antibiotics!

I don’t get to say this often, so let me mention: Besides the at-times-excruciating eye pain, I have felt fabulous. We are finally in our new home and instead of being housebound I have been walking unassisted and moving boxes, and.. ha! Probably overdoing it a little, but I’m willing to pay the consequences this time. The only difference is I’m only on Rifampin because I had to stop the Zithro; unfortunately you can’t just take Rifampin because it creates bacteria resistance. This has only been for two days, to let the azithromycin clear out of my system because I had to start Bactrim today, and I didn’t want them to mess with my QT interval.

After some rescheduling confusion, I spoke with my LLMD this past Wednesday. Apparently his nurses had told him my results, and sent them to me, but he never got to look at them! This happened at his first office, too, when his staff said my Mycoplasma pneumoniae was negative and it wasn’t. (He needs new nurses.) But anyway! He confirmed that my bartonella result is positive. We’re not sure about the ehrlichiosis, as far a what my results showed before I got all the new flea bites; I get the idea he’s not too used to dealing with it though he knows that fleas are a big transmitter and how to treat it. He’s not certain what’s causing my flare-up every seven days, but suspects bartonella. He also said bartonella can cause the spots on my feet (I hope “that’s all” it is), and he’s not too concerned with retesting me because of me already being on the right treatments. I’m fine with that. He was unsure of whether it was my old infection was flaring, or the result of something I caught via those new fleas, but the conversation mainly became, what can we do to kill it now that it’s showing itself?

First I was going to start Cipro. But I have at least four contraindications: severe muscle weakness similar to myasthenia gravis (and I’m not completely certain I don’t have that, not until I get tested a second time this November to be sure), CNS lesions, chronically low or borderline potassium, and arrhythmia related to QT internal. So instead, we’re putting the Lyme treatment on hold for a few months and targetting the bartonella on its own, with Bactrim, to hopefully kick it out completely. So we’re dropping the Zithro, then in addition to the Rifampin I’ll also be on Bactrim. I took my first dose tonight and I feel okay, save the normal things. I hope I don’t herx too bad! The Lyme shouldn’t have enough time (just three replication cycles) to gain any momentum before I start something to start killing that, in January. That will be one year of bartonella treatment! From there I can hopefully just be on some type of maintenance dose?

Also, a current milestone is that this is the longest consecutive time I’ve stayed out of a hospital in three years! It’s been nine months since I last went! There were some close calls, especially two months ago, but I made it through and I’m setting a new record. ;)

AND EVEN MORE GOOD NEWS. I am now almost at the healthy weight I was before these infections relapsed roughly two years ago. I have gained seven more pounds, and have three more to go! This is not only great, but security, because if I ever do end up severely ill and lose weight, it won’t automatically be dangerous.

I think if the Bactrim dosen’t herx me too severely, I should be able to drive within another month. But we’ll see. ;D

Well, that’s all for now. I’m going to the theatre tomorrow!

a rainbow at night

Here we go again! (A real post, this time.)

All right. A real update! (First, a minor apology for anyone who got some semi-annoying “test” posts e-mailed ot them. I was in the process of moving my personal blog over to WordPress and I wasn’t sure how the password part worked.) Let’s see…

As far as I’m aware, the strange macular rash on my stomach is gone. For now.

My weekend sickness? Otherwise known as the Saturday Blues? Well, in the beginning it was from Friday to late Saturday. Eventually it was all of Saturday and Sunday, which is when I mainly started to notice it. A couple of weeks or so ago it started to be Sunday and Monday and now, I think it has moved even further down the week. (I do recall pondering the possibility of it working its way forward, but other things could be causing this, such as when I had to stop antibiotics for a week last month, and the re-exposure to new bugs via the fleas…)

All this weekend, I was fine. On Sunday I even chased my dog around for a minute! But Monday night I started getting an awful headache, which I’ve had since. I’m unsure if it’s a migraine or not, because it moves around and started in my neck, which is not typically migraine-y…? But I did get an absolutely awful episode of Alice in Wonderland syndrome the night before. But yes, then Tuesday wasn’t great, but by the time I woke on Wednesday I was in full meltdown mode, as if it were a weekend. Then today was even worse. I did have a fever yesterday and much of today, but no thermometer to check its severity. I’ve been so medicated. Ibuprofen every few hours, Lortab every four hours, and I’ve already gone through half a pack of my ginger gum whereas I usually only need one per day! Every morning since Tuesday I’ve (worser each day) woken up with simultaneous excrutiating head pain, wanting to vomit, and the room spinning. I know some bug is flaring up, because I have been fighting dehydration for three days, and subsequently had very, very bad Postural Orthostatic Tachycardia Syndrome–I’m lucky to be able to be upright the few minutes it takes for the restroom! Yesterday my father even asked if I needed help getting there, which was truly humbling. (Do I look that bad?) And for it to be happening despite me getting adequate water and electrolytes… It’s typical of my spontaneous bug-related dehydration episodes. (But no hospitals!) Even worse, my cardiac symptoms, which spung up with September’s Beginning of the Month Lyme flare, are in general so much worse, and they haven’t left yet! In addition to the arrhythmia, I’ve also had chest pain, and I’ve been struggling to breathe. I am always needing to take a deep breath (it’s not air hunger, though) and it gets worse when I lie down. So, further evidence for my electrolytes being off, as far as arrhythmia, but… The chest pain, and then difficulty breathing when I lie down…?

I’m starting to wonder if whatever I picked up from the fleas is affecting me worse than I initially thought. I do have an appointment with my LLMD on the 14th, and I’ll be telling him about all these things in case he wants to test for something. I’m not sure what it would help, since I’m already on the treatment, but… It might be important to document re-exposure, if it did happen. So that’s where we’re at…

…I just took a moment to read my last post and noticed that I had nearly the exact same symptoms last Tuesday and Wednesday. Severe headache that started in my neck, bouts of severe dizziness, and (though I forgot to write it above) I also had shin pain yesterday, just like this time last week… Ah! See, this is why I keep a health blog. :\ I had forgotten all about last week, but there seems to be something of a pattern with these symptoms. I really hope next week isn’t this bad–especially because my appointment is on a Wednesday! That used to be the best day fo the week for me, but its’ certainly not anymore. You just have to go with the flow, though. I’ve really been into Buddhist teachings and everything concerning living in the moment. Because that’s all so many of us can do–take it one moment to the next, and enjoy as much peace as we can along the way.

Til next post!

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