A Dose of Reality

First off, a huge thank you to those who have expressed their support and gratitude of my recent writing… I was not expecting it. I have read your words and I want to reply as soon as I can. Right now I feel an update of sorts is in order. Forgive me while I use my spoons for expression, but know that I am actively awaiting the right words to respond to the support you have offered in my direction. :) You help me feel less alone, and on weekends like this one, I really need that…

At the beginning of May I wanted a mini-celebration of the fact that I’ve been off treatment six months and I am still walking okay. So what better a way to affirm my functioning feet than with new shoes!

K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30

K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30

This event was right before my monthly bug-flare, which still happens around the beginning of the month. I forgot about it this time, so it wasn’t until day three of being in bed that I realized why all these symptoms were happening.

I effectively went from walking “normally” in new shoes and eating at my favourite foodie joint, to being in bed four days, excessively sleeping through over half of it, and having seizure-like activity again.

Yesterday, I felt as if every inch of me was buzzing, vibrating from the inside-out. I tried to wash my face with sunscreen, use toilet paper as moisturizer, pour my milk into a sauce bowl instead of a cup, and made accidental purchases online. I found myself standing in places I didn’t have any memory of walking. Yes, I remember all of these symptoms.

But still it helps to know why it’s happening. Not only that, but I’ve noticed I’m typically worse on weekends, again…an ominous sign from my bartonella days, but a fact nonetheless.

 

My ego said, I would rather all this NOT occur immediately after I finish celebrating how relatively well I’m functioning after six months with no antibiotics! Why did you have to remind me, right now? Maybe I wanted to forget for a little while, just how much my body is going through, just how sick it is…

Another part of me is saddened at the reminder.

The other part of me, is thankful for it, that I don’t float away into denial, and hopes that I won’t also sink into despair…at least not for too long.

See, I go through the same emotions as everyone else. I don’t ever want to seem like I don’t. I don’t ever want to seem like the decisions I’ve made or the way I live is something unattainable.

 

I’ve been relatively doing so-so. I never imagined stopping treatment would have given me so much of these months back, these months that I would have otherwise spent in misery with no real benefit except more worsening. Instead, I have more good days right now, I’m determined to use them fully, and I can be mostly comfortable.

Symptom-wise, this has developed:

  • I consistently see the squiggles, black dots, and smoke-fog illusions in my vision.
  • My hands go numb more often, and various irritated nerves cause intermittent curling of my fingers.
  • There is more numbness in my feet, and more of the old “fire foot” sensation.
  • I have more heart palpitations and trouble staying hydrated.
  • My left leg buckles more frequently.
  • I get more spasms in my back.
  • I get choked more easily.

I recently returned from two ER visits with a random virus…and just like after my last viral attack in December/January, my vasculitis is temporarily on hiatus. So for now I’ve been able to stop the daily ibuprofen which was keeping it in check, which I like, and yet this has resulted in more trigeminal neuralgia episodes and eye pain.

While the shot I had to attempt treating the occipital neuralgia didn’t go as intended–giving me odd side effects like falling backwards and an inability to recognize myself in the mirror, I suspect because of the brain lesion(s?)–it DID interrupt those signals, so it’s not as constant as it once was. There are still so many other types of pain, which was depressing to realize, but that one is better. Being on only half the pain medication that I was on before, this has unmasked many of the neuropathy symptoms I didn’t know were developing.

My favourite bit of news is that, I found out if I cover myself in sunscreen before being exposed to sunlight, the vasculitis doesn’t flare up. :) And as of my most recent echocardiogram, my heart function hasn’t worsened, so they don’t want to see me for another 18 months!

 

I’ve noticed I try to leave you all with something that’s helped me, recently. This time I offer you something for your friends and loved ones, and possibly as justification for your feelings, as well: The book, How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. It was mentioned on Facebook by the lovely Toni Bernhard, whose book How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers changed my life a couple of years back. Both of these are also available on Kindle and Audible, so pick your best function!

a rainbow at night

 

Trigeminal neuralgia: A consequence of Lyme disease.

…Or bartonella. Or Mycoplasma. Or similar infections that are commonly found in the same tick that carries Lyme disease. (Unless you’re like me and you happen to get them from other sources because you’re immunocompromised and collect infections like some people collect stamps.) I’m not sure which is the culprit. I know I started getting occipital neuralgia about four months after my tick bite, so that is definitely Lyme disease-related, but… I haven’t had an attack of that in a long time; I think it’s been a year? :)

My serious cranial nerve involvement began when I got Bell’s Palsy immediately after contracting mycoplasma pneumoniae. My right eye twitched and my face drooped. I’ve mostly recovered, but some of the damage is permanent. Then my left eye began twitching and it got damaged. That is permanent. It was all downhill from there, as far as my nerves go. But I’m here to talk about the ones in my face.

When I began treating with Rifampin and Doxycycline in January 2011, all hell broke loose and that’s when the whole autonomic neuropathy made itself apparent. I can’t coordinate how it all fits together, but I know my vagus nerve is damaged, my trigeminal nerve got involved somewhere, the Bell’s palsy (i.e., damage to the seventh cranial nerve, the facial nerve…THE facial nerve, that’s really what it’s called) is a factor, and my migraines are connected.

When I ended up in the hospital, I would eat something, get an “episode” where my vagus nerve would trigger all sorts of things it wasn’t supposed to trigger, and I’d get a migraine. I got so many migraines I had to be on Topamax for almost a year. These days, sometimes when I start digesting (not necessarily having eaten anything), I’ll get facial pain, and it can trigger migraine-like pain on the right side of my face until the digestion stops. I seriously don’t know what happened that they trigger each other…

The trigeminal nerve is implemented in migraines and facial pain. The facial nerve can be implemented in facial pain (ha, no kidding!), and the tongue numbness I get. Also, episodes of trigeminal neuralgia can involve the trigeminal nerve and the facial nerve simultaneously. The vagus nerve… Well, my vagus nerve and I are just now learning to be friends, again. It does and has messed up far too much to mention, here. Relevant to this post, it’s responsible for digestion-related reflexes… But again, I don’t know how all this ties together: I just know these infections attacked my cranial nerves, and I’m left with odd remnants.

 

So after my last post, the “tension headache”-like thing went away and was replaced with the worst episode of trigeminal neuralgia I’ve had to date. Perhaps the tension-like pain was a precursor, or something? (A Lymie friend on Twitter mentioned that she often gets headaches or migraines before her trigeminal neuralgia attacks, too.) The best way I can think to describe what happened is that, I ate a bowl of crunchy cereal, and immediately after it felt like my teeth were going to explode. It’s one of those things where, if someone else told me the level of pain they were in, I would swear they were exaggerating because how is that possible?

My other attacks have been similar–extremely severe, extremely sudden pain that makes you start shaking from its intensity–but it’s never lasted quite this long. I remember a long time ago writing about something that acted like “an ice pick headache that keeps on going,” sort of like last week’s tension-headache-thing-that-wasn’t-quite-a-tension-headache but was basically a quick way to describe those cluster of symptoms. In hindsight, that headache that felt like someone stabbed me in the forehead may have been an episode of TN, too. :\ It certainly sounds like it, from what I wrote.

I especially hate how deceptive TN can be, when it starts to fade away only to attack you suddenly again… How cruel. But that’s a trademark thing, isn’t it? It took several days to completely go away, and stop fading in and out. I have moments of unexplained facial pain daily, anyway, but nothing so severe as that. For my usual, spontaneous facial pain, the kind that is often tied to my digestion for some unexplained reason, Fioricet is a huge help… It’s a huge help in my neuropathic pain in general, actually, even though I’ve never  heard of anyone else using it for that. Half a tablet and my pain is usually gone.

Like occipital neuralgia, nothing much helps trigeminal neuralgia. That night, I was on Lortab and ibuprofen, had to take twice as much as I usually do, and it still only dulled it enough so that I wasn’t shaking. I couldn’t lie down and put any pressure on my skull until it began to ease. The gratitude I had for being able to take those pain relievers cannot be put into words. And I’m still trying to wrap my head around the fact that something can hurt that much, and that I went through it. If you’d have told me two years ago I’d be going through something that would make my face feel like I was being stabbed and my teeth as if they were going to explode out of my skull at any moment, I’d have called you crazy.

I feel so much for people who have to go through TN…especially if they have no idea what is causing it. At least I know what is causing mine.

 

This is not related to TN, but with this month’s Lyme flare up, I had my old parkinsonism symptoms of slow moments and “freezing” while walking. It’s been a few months since I’ve had those, and they definitely caught me by surprise. It was a little startling, even, especially with how slow my hands were functioning. Those of us with Lyme know how it can be when you’re doing “okay” (comparatively speaking) and then suddenly your body thinks it got Parkinson’s overnight! Luckily, as usual, it only lasted a few days and I am all right, now.

Someone help me come up with a closing statement for this entry…

a rainbow at night

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

No more minocycline and guilt over happiness.

The reason I have this blog is to keep track of my symptoms and occasionally share a ramble. I never imagined I’d be getting thousands of visitors… Thank you, for your views and your comments, and I sincerely hope the things I’ve written can help someone else. Many of you have shared that they have, and I will always feel blessed by it.

So yes, I need to update on a few things for future reference… The first one being: My brain fog. If I haven’t said it before, let me say it now: Flagyl gives me the worst brain fog ever. I’m glad I only take it four days a week. My typing has been fairly atrocious lately (sometimes worse than others) so I apologize in advance if this entry doesn’t come out right. I know some of you have to translate it into your native language and this one might not be.. erm.. see, I can’t even think of how to finish that statement! :\

My eyes have been hurting for weeks. I’m so sensitive to light, and I get stabbing pains in them. I’ve spent the past week in the dark. My nervous system has been very sensitive, in general, since I started treatment, however my eyes don’t usually hurt this much… I’m wondering if the Nasonex has anything to do with it. I’ve taken it for.. probably a decade, now? But I had a two year break, and I don’t recall it having an accompanying Glaucoma Warning in the past…? But it does, now. I’ve stopped needing it, so I stopped it two days ago. Today my eyes ARE better, but it’s impossible to draw any conclusions from that. It’s probably just coincidental timing and I’ll get a severe case of eye pain tonight like I did yesterday, aha. If in the future, however, I start Nasonex and get crazy eye symptoms, I’ll know something.

It would appear that warning-hive I got a few weeks ago held true to its title. On the 12th of May, I got very, very sick, and had to stop all antibiotics. Aside from the fact that I felt completely flu-ish with a severe headache, I’d gotten to the point that I could not eat anything, even drinking water was becoming difficult, and amassed in me shaking, becoming dehydrated, and needing Zofran three times a day to keep my nervous system from having a meltdown. These are the same things that the Doxycycline did to me last year before I was hospitalized for five days. We were worried that the minocycline might do this, too, which is why we’ve been easing into it for all these weeks… It’s clear now that I can no longer handle the tetracyclines. I’m just glad that (1) I knew what was about to happen so I stopped the medicine in time, and (2) that I basically had available to me the same medications that they gave me last year to pull me through it (except re-hydrating took a tad bit longer without an IV). After three “missed” doses of antibiotics I was able to eat a chicken sandwich, and it’s been a steady improvement since then…well, at least in regards to being able to eat and keep food in my system.

Wednesday I couldn’t breathe again, having much the same symptoms as two weeks prior. And I’m still having that problem: I cannot breathe when I sit up, but as long as I’m lying down, I’m pretty much okay, though I still have to gasp for air every so often.

Now, I’ve had flare-ups every two weeks for almost two years, now–since summer of 2010, I believe, when I took grapefruit seed extract (GSE) for a few weeks–so this isn’t too much of a shock. But I usually have Lyme symptoms during those flare ups. This time, I haven’t. At all. I’ve had lung pains, and coughing a lot, and an inability to breathe right. That can’t be Lyme disease?

The reason I assumed the GSE had woken up the Lyme disease when I took it, and gave me flares every two weeks instead of every four weeks, is because GSE is a supposed to be a destroyer of Lyme cysts (i.e., the cysts that the bugs were hiding in, open up and start causing symptoms, then you can kill them with antibiotics)… Well, I’m on Flagyl, which is THE cyst buster, so could that have anything to do with my minor Lyme symptoms during these flares? Or is this not Lyme disease at all, and is it Mycoplasma? My money is on the latter for this particular scenario, given the hive and the breathing problems and lung problems which are all the things that I was worried might happen. :\ Because I tell you, my other symptoms are very mild. Shockingly so. When I was off antibiotics this past week, my neuro symptoms barely even flared up! I’ve been having mild “hot foot” sensations in my right leg, and that’s about it. (My tags say I last had that.. well, let’s just say that every time I’ve mentioned it, I’m also talking about Mycoplasma… The evidence mounts!) Nothing went to attack my arms, nothing started quickly progressing like a starved animal waiting to pounce… That is very exciting, and makes me feel like we’ve at least done something the past four months. As I usually say, time will tell! I’ll keep updating on it, and hopefully a pattern will emerge.

Until then, we just make sure I’m on both Lyme and Mycoplasma antibiotics. So I started Biaxin today! I’ve heard great things about this one, and it treats borrelia burgdorferi and mycoplasma pneumoniae and even bartonella, in the event that some of those critters have survived and are saving up for a revolt. Also, the pills are bright orange!

Ah, and so far, I feel accomplished with my goal to not be advocacy-frenzied. I’ve reposted/retweeted a few things, but that’s about it. Life is good, despite everything. I’m happy, even though I feel like I have society and ten thousand other sources telling me I’m not allowed or shouldn’t be… I’m sick, I’m “supposed” to be complaining about everything, right? Ha. Last week I felt the urge to announce, “I’m so happy to be alive.” Because I was. Because I am. And afterward I felt so odd about it. One friend said, “You feel odd because society tells you to complain about your woes. You’re happy because you see what matters most.” Which is pretty dead-on. Another said that people see someone like me “who is thankful for another day and enjoys life as much as possible, and they make a hateful comment” because they’re trying every materialistic avenue available to them and still can’t feel happiness and appreciation.

I suppose when it comes down to it, I was worried someone would take it in the wrong way, or find a way to interpret it negatively, or think I was just “saying it to be saying it” even though I really do mean it. Also, I didn’t want it to sound conceited? I know people going through minor troubles who are very bothered day in and day out, and I have.. erm, well, a lot of daily troubles and suffering and yet lately I have maintained happiness. It’s just a fact. So I don’t want it to sound like I think I’m better than anyone, or something. Because I used to be bothered by daily insignificant things, too! I’m just so happy to not be that person anymore, to have inner joy no matter what, and I want to keep that balance between expressing that happiness about it, but not rubbing it in everyone’s faces. Then again, I only have so much control over how other people interpret what I say, especially when I know my heart is in the right place: Again, balance.

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

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

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

A positive post, with more improvement!

I’ve set some goals for myself:

  1. Brush teeth standing up.
  2. Get out of wheelchair.
  3. Cook for myself.
  4. DRIVE again.
  5. Be able to sit up straight, before I get back problems.

I’ve even already made progess with a few of them. The other day I was able to stand while brushing my teeth, and I’ve been doing it ever since. =) And I’ve been out of my wheelchair most of the time. Yesterday, I even danced! My POTS symptoms, as I mentioned in last post, are much improved but it just depends upon the time of day. I’m trying at various intervals to sit up straight, but I can’t push it too much. I only just now became able to sit up on my own at all; I mustn’t go too far! I now eat twice a day, every day, with lots of healthy snacks in between, and haven’t needed to supplement with Ensure as much. I don’t have as much digestion-related dysautonomia, so I don’t have to split up my meals like I have been for the past two months. It’s such a relief. Since my hospitalization, I was subsconsiously on edge because I never knew what would trigger that domino-effect of terrible symptoms, but I finally feel stable again.

I’m still seeing things. I get headaches every evening around 4-5 o’clock, which has been my pattern since starting the the Rifampin in January. After the Zithro in the late evening (around 6pm), they get worse. Last night my neck was very stiff; it was difficult to even turn my head to the side. I need ibuprofen almost daily at around the 4-5pm interval, as well. The lymph nodes in my throat begin to ache and I feel generally inflamed. I’m lucky that after a decade of taking it, I can still tolerate the ibuprofen, which I attribute to always, ALWAYS taking it with food, or a full glass of milk to coat the stomach. (The aloe vera gel I’ve taken every day for the past seven years probably doesn’t hurt, either.)

Probably the most amazing news I have, is that my 2nd Lyme flare cycle–which I’m near positive began after taking grapefruit seed extract (GFSE) in July of 2010–is, from what I can tell, vanishing. GFSE is known to be a cyst-buster, so my best assumption is that.. it actually did, and the result was another set of replicating Lyme bacteria? This 2nd flare cycle was always milder than my “main” flare cycle (which occurs roughly around the 16-20th), but still encompassed the same type of symptoms: Left sided problems, spine pain, cardiac arrhythmias, severe headaches, and higher fever.

I made a brief mention of this last month, while I was wearing the holter monitor and expecting it to pick up on the arrhythmias that would be happening near the beginning of April… Only to find out, nothing happened at the beginning of April! And this month is the same. I’ve not had any fever, nor severe headache, nor explosion of arrhythmia, nor spine problems. There was the neck pain from last night that I mentioned, and I had one episode of spontaneous arrhythmia yesterday, but this is nothing compared to what “should” be happening. This must mean something very good. =)

Also, I don’t think I ever got to mention my cardiologist appointment on the seventh. He basically said there was nothing there but a fast heartbeat…which is ludicrous, because 90% of the time when I had to press the alert button, I was lying down with a normal heart pace. :\ Unfortunately my appt was early in the morning and I wasn’t able to probe deeper and dispute his “it’s just fast” theory. Doctors are trained to not worry the patient unecessarily, so my best guess is, since he kept repeating “it’s nothing dangerous,” is that whatever was there, he doesn’t think is enough to cause concern. Because of this vanishing 2nd flare cycle, I never did get to record the main, most-troubling arrhytmias that I was having… Which is bittersweet, right? I’m glad that they’re gone, but I wish they had happened while something some recording!!!

I think I’ll end this entry with a new ability scale checkpoint. :) As of right now I think myself to be at.. 20% physical, 35% cognitive, and 28% symptom severity. I had went downwards since my last checkpoint, but I’m back up again, so my physical ability is about the same, I’m slighlty better cognitively, and much better (compared a 7%, at least) with symptom severity.

My mother and I are planning a trip to Walmart for tomorrow. Two sickly women with illnesses that contradict each other, plotting how to attack a supermarket. It should be interesting! I need to find the right time of day to approach so that I won’t need to wait 20 minutes for a mobile scooter to become available! This will be the first time I’ve left the house since that April doctor visit. I can’t wait.

a rainbow at night

Update.

I’ve been feeling mostly “okay” recently, in that I can now function throughout the day. In fact I was even wondering whether it’d be time to increase my antibiotics… And then this week happened.

This week has been exhausting. My menstrual cycle found its way back to me on the 11th, so. The weakness has been terrible, I’ve been half-asleep most of the time, and my air hunger has returned (in that I constantly need to yawn). My appetite is also quite poor.

Yesterday was really bad. The night of the 13th I got a severe headache (Lortab needed) and then the following day (yesterday/14th) I woke up angry at the world and came very close to needing oxygen again… I mean, no doubt I should have used it, but it was just so depressing to think of needing it after a month and a half of NOT needing it! I pulled through, obviously, but could have come out of it a bit quicker had I just grabbed the O2. Sigh. Oh well. That’s my stubborness, and as of last night I was feeling much better.

Bartonella flares appear to be happening as follows:
~ April 3rd
~ April 8th (bad day)
~ April 14th (bad day)

Last night I drunk an Ensure… I wasn’t thinking and had the entire drink. So what happened that night here happened again. Trouble breathing, numb tongue and throat, limbs tingling, numbness in right arm. It was even more startling when I wanted to inhale but my body wasn’t doing it…! But I knew the dysautonomia was causing it, so I didn’t spaz. I’ve been drinking two bottles of Ensure a day, in 4-ounce doses to not overload my digestive system, which I should have done last night, but forgot. :\

So I think I should still be on this small doses. The herxing just hasn’t been as bad, which is good, but.. as long as I’m still herxing a little, right? I still flail and have bursts of strange thoughts after the Rifampin. And after the Zithro, my gosh…! I am so dizzy. In fact I need to mention that I’ve been dizzy for the past three weeks. I may even need to be keeping track of it, more. It gets so bad sometimes my eyes cross and I can’t focus.

In general, I am in and out of the wheelchair. I can usually walk to get something, but cannot stand in one place, even for a few seconds. In the evenings and night, I am always better, but this is nothing new. Waiting for my appetite to return… STILL NO CARDIAC SYMPTOMS!!! This is so significant and amazing! :D And my eyes have stopped twitching… :)

a rainbow at night

A neurologist visit, and autonomic neuropathy.

Monday was very stressful, for me and half of the country. There were storms and tornado scares. The only reason I’m mentioning is because the resulting relapse from the adrenaline surge of just barely having to run for safety has sent my body reeling. I definitely began paying the price for it yesterday… But at least there is still a house to pay the price in; some of the surrounding homes weren’t so lucky.

After my neurologist’s appointment I was sicker than sicker than sick. The dizziness has been incredible. My right eye began twitching, even, and I got a massive headache that persisted even after vicodin and ibuprofen.It’s been with me today as well, which must be something of significance because I can’t remember the last time my eye twitched.

My new neurologist is simply fabulous.

  • He listened to what I had to say.
  • He asked questions to better understand what I was getting at.
  • He did a full neurological exam (which I’ve NEVER had before, if you can believe it).
  • He didn’t tell me I was crazy or just over-reacting.
  • He didn’t scoff when I told him about the M.E. and the Lyme disease.
  • He was actually HELPFUL and offered me HELPFUL tests and rehabilitation.

Most importantly, he was able to take the time to explain to both my mother and myself what was probably going on. He didn’t get exhausted with me, and he’s going to be my primary neurologist! I see him again in four months. :)

I feel so great about going…even though I didn’t want to. I just figured, if three different doctors told me to see him, I should probably just take the “hint” and go. He said he gets a lot of the complicated cases, and surprisingly (or maybe not-so-surprisingly) a lot of his complicated cases get better on antibiotics than steroids. Hmmm…!

As far as what he found, he says I have some neuropathy in my limbs, and the reflexes in my legs were blunted. He was actually able to stand in front of me while doing the knee jerk reflex test. He also talked about cranial neuropathies, and said he can see the remnants of the Bell’s palsy in my face. He says he’s not sure if it will go away or not, but if I get out of this mess with “only” a crooked smile, I think that’d be fine with me.

Ah, and I didn’t prompt him at all, I swear, but I ultimatey asked him, what about the numbness episodes that are associated with my digestion? And he started talking about the vagus nerve and autonomic dysfunction. Insert me having to hold back my shock, here. He explained how the vagus nerve controls the things like heart rate and blood pressure and the digestive process, and.. all the other random things I’ve already mentioned here. And guess what, people. The vagus nerve is what initiates the swallowing reflex! And he thinks other cranial nerves are involved in this (my face and tongue going numb) because of my initial presentation with Bell’s palsy, signifying the infections are obviously attacking there…

So, basically? I have autonomic neuropathy. Everything that I thought was happening? It’s actually happening. The cause of these “episodes” I’ve been having really is dysautonomia. (I’m just neuropathic all over the place right now; he likened my nervous system to that of an infant’s, learning to grow and wire itself in the appropriate ways… I just hope it doesn’t MISwire.) The doxycycline really did initiate my the vagus nerve issues just like it did the first time, pushing me into that incredible herx where I couldn’t eat and couldn’t swallow and had a nervous system meltdown from it trying to kill the bacteria that have thoroughly engrossed themselves in my nerves… It’s really clear why everything else–my migraine triggers, response to caffeine–is just so hypersensitive right now.

He wanted me to have spinal tap done to see if the Lyme would show up. I told him how it doesn’t show up, and in fact is even less likely to show up there than in the blood, but he seemed to think it “should” show up anyway, and also wanted to see how much nervous system inflammation there was… But honestly, I don’t see a point in doing this invasive procedure, when it has only a 13% chance of showing Lyme disease, and my insurance can use that against me to deny me my medication. So, no lumbar puncture.

My B12 levels are fine–they tested me in the hospital. *sigh* I sort of wish they’d have been off–! But he’s testing me for a B1 deficiency because he said sometimes it can cause the same type of lesion on my brain. Ah, and about that, he said that at least it’s a stable lesion (i.e., not changing) and though he could easily blame my new problems on it, he doesn’t think it’s to blame because it’s been there since at least 2009.

In the end, he said to continue on my antibiotics because they were helping me, though he did hope I would’t have to be on them indefinitely, and he’s giving me a referral for neuropscyhiatic testing to better understnd what type of cognitive dysfunction I’m having. He didn’t want to do it in office because I seemed so alert, and basic testing (remember these three items in order…) wouldn’t have shown anything. Also, he wants me to try memory training to see if it will help… I’m not sure how that will work with having M.E., but I figure it can’t hurt? I mean, unless it does, then I’ll stop going, but it might be good to make sure my brain follows the right path in its healing. (It’s ironic, though, because as my treatment progresses, my cogniton will improve anyway? Ha.)

Tomorrow I see my cardiologist again, probably get this holter moniter off of me, and we’ll see when I’m to go to the rehabilitation clinic to analyze how my brain is functioning.

And there you have it!

a rainbow at night