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!!)

I’m listening to the crickets chirp.

It’s one of my favourite things to do at night when it’s very quiet. Perhaps because it reminds me of the peace I had at my own home. I would listen to them every night as I fell asleep, the frogs and the crickets, and every morning I’d be awakened by birds chirping outside my window… Now I get that here, too. It’s one of the perks of summer. :)

 

The past week I decided to take a break from social media, Facebook and Twitter and the like. I still updated a little, but I couldn’t keep up with everyone else. I needed a social break. Also lately, in my social frenzy (I like people and interaction, I really do–don’t let the sick-person thing fool you), I realized I was starting to backslide into giving my very precious energy to people who don’t return that concern. It’s something with which I’ve struggled to maintain balance for years. I suppose, because for a small time I was able to be more social than usual, it caught me by surprise when that was no longer the case. I was reminded just where my energy was going–into relationships that were otherwise a one-way street, just me conversing with people who, for the most part, wouldn’t even bother to check on me if I suddenly disappeared. So I needed to back up and regroup, gather my thoughts and focus on what (and who) is important. It all helped.

And I made two great accomplishments this past week!

 

First, I walked inside a supermarket to do my grocery shopping and did not need any mobility assistance! Secondly, I ate a salad without the autonomic neuropathy screwing over its digestion and causing me severe pain later!

I’ve made several milestones this past year, as far as leaving the house. My first trip into an outside building using only my cane instead of being in my wheelchair–just standing up for those few minutes was amazing. My first minor trip inside a real store without needing a mobility scooter to do my shopping (though still earplugs, and sunglasses)–standing up on my own for more than a few minutes, amazing still. Now I’ve done my own grocery shopping, walking around completely on my own, for what must have been half an hour, with only earplugs. Another step in the right direction. :)

I wasn’t able to drive, or stand in the checkout lane, or put up any groceries, but I’m sure that will come later. The following three days (or, the past three days, I should say) have been spent recovering from that excursion. One with M.E. recovers by doing absolutely nothing. I was fortunate to not have too much of a neurological overload (probably because Lyme & co. are being beaten down?) so I was able to watch DVDs to pass much of the time. I went into rest-mode immediately after we returned, but the main start of the crash occurred roughly 24 hours later, very predictably with my legs. I took extra Co Q-10, and L-carnitine, and magnesium, and made sure I got enough protein, and maintained adequate hydration. After a decade with this disease I’m pretty used to coping with what inevitably occurs after so much activity: the muscle relapse and inability to be upright, from an overworked heart muscle and damaged mitochondria. Without all my supplemental intervention I would definitely NOT be at all functional, yet. But I’ve learned a few tricks or two! ;)

As for the salad, well… I love raw vegetables almost more than cooked ones, and I love fresh salads. But for the past several months, while my nerves have been trying to heal with the help of these antibiotics, I could not eat any raw vegetables (or anything high in fiber, for that matter) lest it trigger a neuropathic “episode” of my digestion basically.. stopping. My body would start to digest and then just.. stop. It’s incredibly painful, and something I’ve dealt with sporadically since first starting treatment to kill these infections, but which progressed pretty far before any substantial bug-eradication could be done. I’m not sure what the exact specific name for it is (I’m assuming something along the lines of gastroparesis, yes?) but it lasts for hours and I have to break out the caffeine to jump-start my nervous system and get things digesting my food again. :\ (Silly vagus nerve, either causing things to do too much or too little.) Needless to say I’ve been avoiding that horrible scenario… Until today. I thought enough time had passed to at least attempt some veggies. So I ate a salad…and everything went as normal! It was amazing. I’m hoping I can get back to my usual pre-neuropathic diet, or at least incorporate more of the things I truly enjoy eating.

 

As far as peripheral neuropathy goes: Much better! I can wear normal clothes again, for instance. And as far as the asthma flare up: My cough is now gone completely. :) My eyes have also been better, hence me being able to watch DVDs a lot. However, I did have a headache flare up last weekend, probably because I always get a flare up (Lyme or Mycoplasma, it’s anyone’s guess at this point) around the start of the month. I also had several days worth of migraine attacks (with horrendous postdrome) because I didn’t realize soon enough that something I was eating repeatedly had sucralose/Splenda in it. Erm… Some number of days ago I had a hive again. Any nick or cut I acquire refuses to clot for a long time, but with being on ibuprofen 2-3 times a day for the past two months, I guess that’s to be expected. My inflammation must be in a down phase, because I only have to take one ibuprofen per day right now. :) Probably because of the more-advanced anti-inflammatory (corticosteroid) I’ve had to take in the form of Dulera… Oh, and the urinaylsis came back normal, but we expected that much, right?

One thing I do wish I could start is my Zoloft, because my OCD is borderline raging recently, from so many months not taking anything for it. I am on so many prescriptions right now that I cannot bear the thought of adding something else. I have never been on so many prescriptions at once in my life! I’m trying to keep in mind that this is just a temporary thing, to help get me through this phase of treatment…

That’s all for now. It was nice to summarize my improvements for a change. :)

 

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

So, is everyone surviving the holidays?

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

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

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

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

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

Take care, my dears.

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

a rainbow at night

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

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

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

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

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

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

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

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

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

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

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

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

a rainbow at night