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

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

Lyme flare recap, pictures, and a small rant

I’ve decided to do things a bit differently this post. I’ve been planning this entry for four days, but I’ve been so severely confused and disorganized that it’s been a huge struggle! I did manage to scrape together some random notes for a private entry on Monday, so I can use those to help me. Several things to say this time around, but first thing’s first, considering the entire reason I have this blog: Symptom recap.

This has been the lightest Lyme flare I have had in months. I was not bedbound! I barely had any dystonia and I had no cardiac involvement whatsoever! I did get parkinsonism. But the main feature has been extreme cognitive dysfunction (brainfog, if you will). My eyes dance over words instead of reading them, my brain hasn’t been able to form sentences in the right order, and my memory is on temporary hiatus. I’ve also had moderate-severe fatigue, which was expected. I’ve fallen asleep numerous times during the day, and the fact that my sleeping has been so disorganized at night does not help. There’s been more difficulty breathing, and my herxing has been worse, which I seem to recall happening last month around this time as well? I did have a day or two where I was extremely thirsty, but I don’t know if it was infection-related borderline dehydration or Zoloft-related cottonmouth… And I had several “headache bursts” from the 19th-20th; it eventually stuck on Monday, and moved to my neck, so I needed Lortab and ibuprofen. My back was hurting, specifically my upper back (another Lyme trend–it used to be my lower spine, but more recently it likes to affect my upper spine), and I also had the strange arm numbness phenomenon that happens, with certain severe headaches. Monday night was severe as far as the dysautonomia is concerned; my tongue was completely numb, and my face tingled. I was also anxious, which tends to happen when the vagus nerve is being.. out of line. Sometimes when I digest, it can feel like an anxiety attack without the anxiety, if one can imagine that sort of thing.

Otherwise,I’ve been seeing things more often (again), starting at least around the 17th. There was a possible bartonella flare on the 19th-20th: I had a ton of shin pain, and moderate amount of foot pain. However, my legs were also sore in general, so I’m unsure if this cluster of symptoms was bart-related or just activity-related. That said, I also had the moodswings, the muscle spasms, and the frontal headache, so…

Being in the sunlight for five minutes on Monday started a systemic reaction that lasted all night, even with ibuprofen. It’s not arthritis or joint pain, but it makes it difficult to bend my joints, because it feels like something is tearing. My joints are warm to the touch. Does anyone else get that? It’s funny, because it’s a Lupus-like symptom, but I happen to be one of the people with (multiple!) negative ANA results! I find that ironic in a world where it seems like everyone with Lyme gets a positive ANA at one point or another.

Also, I’ve had tinnitus for a month now…at least, that I’ve noticed. There is always some type of white noise in my surroundings, and I’ve noticed for the past month that whenever it’s truly quiet, my ears are ringing constantly. They of course started doing strange things when I started the Zithro, and there were those couple of weeks when my equilibrium was completely off, so I’m assuming there’s some inner ear component to this illness. Who knows, I’ve always struggled with ear infections. It was even an ear infection that made the M.E. relape, as well as caused scarring from the persisting inflammation; truly, who knows! But I hope it’s not permanent!

I saw my primary physician on Monday, which is why I left the house. She was very glad to see the treatments are finally working for me; even she was starting to wonder whether they’d be worth it. She was pleased with the combination of medications I was on, also. She said Rifampin added to other antibiotics can increase the effects of those other antibiotics, so even a small dose is still like a superdrug. Makes perfect sense to me, and helps solidify all the things I’ve “heard” about Rifampin increasing the effects of other antibiotics: It’s true!

Now, would anyone like to see a few photos for a change? First off, about three weeks ago an “anonymous” friend mailed me a Giant Microbes plush of Lyme disease. I took a picture of him! (And eventually found out the friend.)

Then the day before, another friend mailed me a box of assorted presents, including a belated sugarfree Easter bunny! There was also origami (cranes in a box and one dragon), a gorgeous necklace, more sugarfree chocolate, soothing scented candles, and.. baby spirochetes!!


Aren’t they just adorable? I unraveled the one at the top to sling around a bit, ha! What I didnt include in the picture are the new notecards (complete with rainbow-esque case), but that’s because I was too busy using them to keep myself organized!

Also, the card has a Yorkie sticker on it. That’s because I have a yorkshire terrier/maltese mix (technically a Yorktese), named Muffin. My family has been taking care of her for the most part until just recently, when, with my improvement, I’ve been able to be more of a dog mommy to my own dog. She’s still growing her hair, but here is a recent picture of her!

It took so long to get a good shot of her–I eventually had to put the camera on the ground!

If you rememeber me briefly mentioning Zoya Nail Polish in my first video post, I believe I was wearing Yummy. I recently applied it again (just one coat, though) and thought I’d share. I’d like to start encorporating more of my “real life” in this blog (things that don’t revolve around symptoms and disease advocacy) as hopefully, with my improvement, I’ll have more of that to share.

There’s still a health-related hook, though. The main reason I love Zoya–beside the fact that they are free of dangerous chemicals, particularly camphor, whose toxicity can be inhaled–is that the application lasts so long. No more chipping in just a day or two, ladies (and the occasional fellow); with Zoya I can use two quick coats and have it last all week. It’s become a ritual of mine that helps brighten my mood and my self esteem. If I cannot do it myself, a family member will help me, but every Friday night I redo my nails, as I briefly mentioned long ago in my How to Deal with a Bad Day post. :)

And one last thing. As a fair warning, please do not send me e-mails telling me how you do not “believe” in M.E., or chronic Lyme disease, or whathaveyou. I’ll simply block you, like I’ve had to do once already this week. (What a  coincidence–or not–that someone found my blog this week by searching for “myalgic encephalomyelitis why no one believes my pain.”) It’s bad enough that I can’t talk to people with Lyme disease without them doubting that M.E. exists, and that I can’t talk to people with M.E. without them doubting that chronic Lyme disease exists. They BOTH exist. I had one, then I got the other; I am your proof. Do you have any idea how hard it is to get support in either of those communitities? And for that, I blame the CDC, for literally CREATING the category of “CFS,” so that people are forever being misdiagnosed with this catch-all syndrome instead of their real ailment, whether it’s M.E. or Lyme or cancer or whathaveyou. Like a friend said: If I had HIV, would people question that I couldn’t have HIV because I had Lyme, or vice-versa? No. They understand that they are distinct, both disastrous, and you can have them both. You treat them, and you do the best you can.

I’ve given everyone lots of accurate information about both M.E. and Lyme disease through the links on the right side of this blog. Please make use of them before contacting me about such offensive matters.

Until next time!

a rainbow at night

A monumental moment!

Well, the beginning-of-the-month flare might be vanishing, but perhaps it’s not completely gone yet.

For the past two day (prior to today), I was having that left-sided “fire foot” sensation. I imagine people with peripheral neuropathy will know what I’m talking about. It’s as if you’ve momentarily stuck your foot into a fire, hence, “fire foot.” It usually occurs during my Lyme flares, but I’ve heard a lot about it concerning bartonella, which has an affinity for the feet, so I’m not positive. Also, my brain fog for the past.. I’ll say four days (again, prior to today) has been ridiculous. I’m usually ten times better cognitively, while on my olive leaf extract, but not even that has been able to save me from whatever’s been happening. The main event of today has been more peripheral neuropathy, but of my left arm and hand, to where the skin feels raw; even the sensation of water was painful. So highly uncomfortable, but I’d like to think it’s happening because the bugs are being killed there. And that’s about all. Some “leftovers,” if you will, but this is still a great step up. I can’t wait to see what doesn’t happen by June! :)

Neuro status: I’m still seeing things, but not as much. My face still tries to slant to the left every now and then. I’m still struggling with dystonia and parkinsonism, but it’s no where near as severe as it’s been in the past. I now only have an action-oriented tremor instead of a constant tremor. I’m still having autonomic neuropathy with my vagus nerve, but it’s so much improved I only notice during a larger-than-normal meal.

So, on Tuesday we went to Walmart. It took everything I had to get out of the house. My supplements, Ubiquinol, a good prayer, some meditation, and Vicodin. (I can’t have caffeine, if you’ll remember.) But I did it! Then Yesterday I “payed for” it with a crash. Then today, after a whole bunch of rest (and ubiquinol) to help the crash, I was mostly recovered! (I cannot, cannot, cannot stress enough the value of Ubiquinol or Co Q-10 during this. I just can’t. If you’re reading this blog and you have M.E., or even if you have Lyme, you need to be on this supplement. It is worth every dear penny.) So today, being recovered, we had a few more places to tackle. Post office. Dog medicine. Dog food. I got out at two of the places, with just my cane!!!

It’s the first time I’ve been in a store (or any building) without my wheelchair, since last year.

I’m slowly but surely accomplishing my little to-do list! This morning I even brushed my teeth and washed my face, while standing up! *waits for the resounding gasps*

Oh, treatment is working.

a rainbow at night

Slowly but surely…

…I think the pieces are coming together. I had several “episodes” since I last posted, and.. let’s be clear, that by “episodes,” I mean the thing that happens when my face and tongue go numb, my arms (or arm) goes numb, I shake and temporarily cannot swallow, which may or may not be precipitated by an urge to urinate. I’ve had lots of different types of numbness over the past several weeks, so I felt a need to clarify.

I eliminated several other things that had any timing whatsoever to do with these attacks and/or my Migraines.

  • Ensure
  • BOOST High Protein shakes
  • things with Vinegar
  • things with nitrates
  • caffeine
  • black tea (even decaf)
  • coffee (even decaf)
  • Truvia
  • Splenda,
  • and Aspartame (which is the devil anyway).

Because anything and everything can give me a Migraine attack these days. I had something marinated in apple cider vinegar and my body had a general meltdown. I had green olives with half a protein shake and had another “episode” almost immediately, so I can’t tell which was the culprit. But, having done all this, I actually haven’t had a Migraine in two days. I can’t believe that’s an accomplishment, but… I’ve been getting them every day, otherwise. I even left the house yesterday, and didn’t get one! And in the mornings, I don’t have much numbness in my arms and face, but I can’t yet determine if it’s the absence of Truvia or just a well-timed symptom. I’m scared to find out the hard way, right now. The general battle is finding out what cluster of symptoms is the bartonella, what cluster has to do with my Migraines, and how do we prevent them both. One interesting thing though: It happened this morning, and I hadn’t any Truvia, or any.. anything! Which means it can’t be purely the Truvia, despite me having a decrease in overall numbness since ceasing it. (And there’s the kicker. None of this is purely anything, but it seems to be a lot of stuff happening wrong at the right time. Which is another characteristic of my Migraines: They don’t happen until a lot of triggers add up, and then just one more will push it over the edge.) Now, what affects me worse in the mornings? Bartonella. So, which is it? My conundrum should be apparent.

My LLMD put me back on Rifampin as of the 17th since I didn’t have anything crazy happen after a month and a half on it. Then, instead of adding Doxycycline, which is driving me out of my mind with its effects and herxing and messing with my throat/vague nerve, we’re adding the Zithro! I’m pleased to report I can handle all temperatures of food and drink and have no trouble with food texture. :D I’m on just 250mg, but considering this lowest dose still makes me feel like I have the flu every evening, I’m glad we’re starting so small. I’m still on a normal dosage of Rifampin and therefore we’re killing the bartonella at a reliable level, so that’s great news for me. I will still improve at a fairly decent rate, and can expect a change in ability levels within just a few months. I’m also lucky to not have developed any reaction to Rifampin, which can happen when you stop and have to start it again. It’s apparently still working as well, because the bartonella flare I had after I restarted it (which happened to be the next day) was insane. As in, curled up in a fetal position in a dark corner of my room, sobbing hysterically, not knowing what’s going on, or even how I got there, insane. So… We definitely have to kill them bugs. Kill them dead. (This goes in the category of “things I’d never admit did I not know they happened to most people with chronic bartonella.”)

The Topamax is amazing and I’m at the full 25mg right now. My Migraines… Well, I’ve had them a long time. So I can identify when they’re coming on, but lately they have been so complex, it’s ridiculous. Usually, my migraines affect the right side of my face, with numbness and pain and temporary facial unresponsiveness; my speech slurs and I cannot tolerate any sound or light. Bartonella attacks the right side of my face too, though. :\ This recent development where my arm goes numb and my tongue goes numb? It’s anyone guess whether that’s part of a Migraine or part of a bartonella flare or herx. (It’s sometimes accompanied by this “zap” sensation as well, which I’ve never felt as part of any Migraine.) But after searching LymeNet I found out that other people with bartonella are experiencing numb tongue accompanied by numb arms. How strange is that?! One thread even talked about the general numbness that’s been creeping up on me since I started the Rifampin! And on that note, twice after taking Rifampin this time around, I couldn’t feel my legs, and all of my limbs generally have that “fallen alseep” feeling at various parts of the day now. Especially at night, when I wake up and notice my limbs are cold and numb. (That’s a bit scary, but as long as the sensation returns, I can deal with it.) So! The mystery of the random arm numbness and terrible headaches that often precipitated them, may be solved! My severely increased Migraines may just be an unfortunate consequence of treating bartonella. What also falls into place, if this is true, is why all all of this gradually got worse throughout treatment, until I got on the Doxy and all hell broke loose. Hopefully being on Azithromycin will prevent such a severe cumulation of symptoms.

In general, the “episodes” and my migraines are getting less severe and less frequent. I still have trouble when I eat sometimes, however. (Things that HAVEN’T been happening, barely at all? No dystonia, no air hunger, and no troubles with low oxygen.) I will be sticking to this “Migraine diet” until I feel safe enough to come off of it. The Ensure drinks are once again off-limits, but that’s okay because my appetite is very healthy and I’m not losing weight! I’ve been gradually adding back my supplements and herbs as well, and I’m able to tolerate them again. I’ve actually been walking around more in the past few days than I have.. possibly since January, which is amazing. As long as I don’t overdo it, I think I’m finally at a stable point again. I’m not tired, so I’m having to force myself to rest and not do more than is necessary, which is.. well, it’s annoying. It’s like sitting a healthy person in front of an amusement park with unlimited tickets and telling them they can’t get up. :| But if I’m good now, in the future I shall be able to be active without dire consequences, so I must be patient. God’s given me the best opportunity for having rest, so I need to take advantage of it. On the scale right now I’d say I’m at, 20% physical, 30% cognitive, and still 7% symptom severity. The symptoms are definitely the worst part of this right now. They are still terrible and flare so easily. But I do have a lot more cognitive functioning so I can at least use my brain more. :)

Ah, and I saw my primary physician. I had to update her on everything that’s happened during the past three months. She says not to be too worried with the brain lesion unless it changes…which is good advice, right? It’s there, it’s done; it’s if it changes that will be cause for concern. She also wants me to see another cardiologist in case something else is contributing to the mitral regurgitation. Which is, again, sound advice. Just because I have things that affect my heart doesn’t mean nothing else can be going on. So for peace of mind, my mother is taking me to one Tuesday to get a bunch of tests run, just to make sure there’s nothing there we can potentially fix.

I’ve had the same doctor for ten years. She’s seen me from the moment I started going downhill, and through the M.E., and through the remission, and then through the relapse and these infections… So her advice means more to me than any other doctor. She briefly mentioned to me something that.. sort of startled me, in a strange way. She said something to the effect of, I know you’re at a race against time to treat these infections, but you know, even in cancer patients, if the chemo is going to end up killing them… Sometimes it’s wise to just let things take their course, if the treatment is going to be just as bad or worse than the disease, so I really hope you can get on something that will work, soon, because it pains me to see you continuously going downhill like this.

…Insert sad face here?

Hearing her say that just sort of drove everything home for me, I think. These past three weeks–goodness, nearly a month!–since ‘all of that’ happened, have just been one big blur and me taking it one hour to the next, to not upset the delicate balance that my body is struggling to maintain. Consciously I do realize what I’m up against, but there’s something about talking to your doctor for twenty minutes and having her sum it up all into that

It was never a surprise that things might get this bad. Even in my old journal from the past year, which I reorganized, I found where I’d written things like this:

December 5, 2009

“Two weeks ago I couldn’t make it down my hallway. Tonight I shuffled around in the yard, and made a snowman. No, I wasn’t exactly running around, but I was STANDING UP and doing so for more than two minutes…

I’m making this post now because if what I feel right now is any comparison, tomorrow is really going to suck. No one wanted to come out in the yard and make a snowman with me. They walked outside for a minute then watched from the door as I shuffled about, but… Hell, I have no idea what condition I’ll be in next time it snows, especially if that’s a year from now. I could be better, yes, I hope, but I could very well be bedbound yet again, or worse; anyone faces these risks for some reason or another, but that knowledge is always in my mind because of.. you know.”

I guess it’s sort of like when everything tumbled in July of 2010, and I ended up living with family again, barely having a spare moment to think because things had reached a new level of bad and it all happened so fast… It just happened again, I guess. And now I’m realizing it. (Granted, I’m back on my olive leaf extract, so I’m much more “aware” of everything again!) But somehow–and the media doesn’t help–you just imagine that with enough determination you won’t “let” yourself get this sick. Ahaha. Like it’s a choice…

a rainbow at night

So far so good.

Sunday was stressful. Unavoidable, unplanned, stressful. Not too great in the health department to start with, raging bartonella flare and all, but of course stress makes anything worse, and there was a lot of it, so. I listened to music, was in bed, and did not move. I don’t think I saw past my hallway. The rest was needed, though.

You know you have M.E. when you do not move all day, and actually feel more energetic by the end of it. I sat up and painted my own nails, and didn’t even have to lean against anything! I’m thinking of this in comparison to Fibromyalgia, where if you lied in bed for a day, you’d mostly not be able to move, or depression, where you’d feel worse after all the not-moving and/or have further lost any motivation to do so. There are some illnesses where you have to get up and be active and stay mobile to facilitate treatment. Fibromyalgia, as I said, is one. Exercise is also crucial for the recovery of Lyme disease, if one is at that level… I feel a need to mention YES I KNOW this isn’t possible for everyone; please don’t hate-comment me. The presence of coinfections and the overall level of severity plays a huge role, as immune activation that occurs with the activity will cause a temporary worsening of symptoms. But in general, the moment you can exercise without hurting yourself, you must. That is completely not the case with M.E.

And this is the point where I want to ramble about how cruel and indescribeable the Lancet’s recent “study” is on cognitive behavioral and exericise therapy with “CFS”… You know, the “CFS” study that probably didn’t include even a SINGLE person with actual Myalgic Encephalomyelitis, and yet whose results will attempt to be applied to us anyway? Which would ultimately destroy us? Yeah, that one. How long before they stop grouping CFS and M.E. together? Will they wait until someone drops dead in front of their feet? Ah… But I won’t, because that will be stressful, and I’ve had enough of that. There are others who can tell you all about how wrong it is… Ugh.

Anyway.

Sunday/two nights ago/the 20th, though I had felt better after all the not-moving, that didn’t change the fact that I still had other things going on. I got a migraine that day, and woke up on the brink of dehydration. That night, I became spontaneously sleepy, and then un-sleepy, repeatedly. It was bizarre. Eventually I recognized it was my heart rhythm, which was arrhythmic and slipping into random bouts of brachycardia. As my heart beat slowed (which is incredibly rare for me!) my oxygen levels began to drop. At first this caused sleepiness, but then I started having terrible dystonia. I had to plug up to the oxygen machine, which I was so thankful to have, particularly at that time. After a few hours my heart rhythm stabilized. I suppose being Lyme-y, during a bartonella flare, and waking up dehydrated, isn’t a very good mix for your heart rhythms!

Yesterday.. hmm.. I’m not sure I remember much about it, aside from a lot of rest and feeling very sleepy. In the first part of the day, I rode with mum in my car. We had the windows down and it felt fabulous. It was a beautiful day to be out and.. well, I don’t think I’ve been anywhere past the front porch since the 3rd! I’m trying to arrange a wheelchair ride through the park soon. But not this week. This week I’m on high alert because of what my symptoms have been doing, as I think I mentioned. I did and still continue to cough + have random stabbing pains in my lungs that prevent me from fully inhaling. If I make it through Thursday and Friday without any (seemingly but notso-) sporadic hospitalizations, we’ll be in the clear.

Today was another one of those “take antibiotics and experience a crazy herx” episodes. My left-sided symptoms were exacerbated upon waking–left leg and eventually left side of face went numb–and I had tremors everywhere after the Doxy and Rifampin. I could not stop shaking. I’m better now, of course. The “air hunger” has died down considerably, and I’m thinking my Lyme week is over, now. All I’m concerned about–especially with this previous brush with dehydration–is what’s to come by the end of the week. I’m staying extra-hydrated to try and prevent whatever I can. If it worked in November, perhaps it will work for me again, if this month is indeed to be another one of “those.”

Ah, I’m quite hungry now, so I’m going to go eat! :)

[Edit: Updated the days about which I was talking. Because I got so confused, ha.]

a rainbow at night