This is an entirely new way of formatting, but…

…it’s the only way for me to get this entry published. I’m basically forcing myself to update. I won’t be making a habit of this, but for now… Purple things about life, black things about health updates (read as: Purple for things that are semi-interesting, black for things that I need to write down lest I forget). Also, some random quotes by me, because, why not.

  • June 5th: I started reading American Gods. (So far I’ve made it to chapter four, I think.)
  • June 6th: I got my bloodwork back, showing that my liver enzymes are perfectly normal, back in their 20s and 30s, thanks to the Liver Chi my LLMD put me on! I’m enthralled. If anyone is having trouble with their liver enzymes, and milk thistle isn’t enough, try this stuff! I’ve been on 2 capsules 2-3 times a day, as per doctors orders.

~*~ Life is like Music. If you combine a few key, simple
elements in the right way, you get beauty.
~*~

  • June 8th: Spent the day listening to music and watching the rain. If you want to know what it sounded like (AND YOU DO), open and play this and this at the same time. Also, decided that one day I will own a professional camera.
  • June 9th: Shaking for most of the day with very visible tremors.

~*~ Acceptance doesn’t mean we sit back, stop fighting, and
give up hope. It means we acknowledge truthfully
where we are and how we feel about it.
~*~

  • June 10th-11th: Muscle fatigue (via M.E.) due to a lot of arm usage in talking/typing to a bunch of amazing people. (It was worth it. ♥) Also very, very sore, with a “I feel like I’ve been run over” type of pain, reminiscent of my fibromyalgia days, but not as severe. I had ordered some very soft clothes that finally arrived, which really helps the burst of peripheral neuropathy I’ve gotten lately. I’m assuming my nerves are trying to heal from whenever these infections had spread to my arms several months back. Fioricet is a HUGE help for neuropathic pain!
  • June 11th: I realized that, over the past.. well, a long time, I can’t remember anymore, but I’ve developed oromandibular dystonia that’s mostly triggered by eating. I hope it is worsening now because of herxing, like my other forms of dystonia did when I began treating bartonella last year, and not because it’s something that’s going to hang around. I have quirks, yes, but it is mainly triggered by me trying to eat and chew, etc. Perhaps there is some kind of sensory trick I can learn to tame it? I have some information about when it may have started thanks to my wonderful tagging system, but I’ll have to sort through that, later.
  • June 12th: My niece made me an acronym poem, something awesome about me for each letter, and left it out for a surprise. Aha. I love being the aunt. ♥ Also, I needed my glasses this day. Most days I am fine and don’t need them indoors, but it was a “blurry-can’t-see-the-tv” day. Does anyone else get that? You just wake up with poor eyesight?
  • June 13th: I felt great, it being a Wednesday and the furthest day from my Thurs-Sun Flagyl pulse. And for the record “great” means being able to breathe when I stand up, and able to walk around. I did some minor cleaning, and even did some laundry!

Yesterday I had my cardiologist appointment. He agrees that the palpitations are probably from the Liver Chi, said to be careful with the ibuprofen since it is also processed by the liver, and to continue getting regular labwork to make sure things stay stable. If anything continues to flare, I should go see him again, but as of now I am good for another five months and I don’t need to repeat any heart function tests until next year. :) He’s sending me to get a urinalysis because I have nocturia that has been worse the past several months. During the day I think I urinate a normal amount, but during the night it gets worse, and we’re not sure why. I also told him about this cough that’s gotten worse the past several weeks, but I forgot what he said! Also, I had the beginnings/continuation of further eye problems, which I want to talk about, more.

My eyes continue to be a bother for me. As I mentioned previously, I’ve been staying in the dark since beginning treatment because it is too painful to be in normal light. Some random days I am okay (like the day it rained, and I was able ot have the window open!) but for the most part, it is me in my dark room with my dim lamp.

As for this recent “episode,” I assume it started on the 12th when I woke up and needed my glasses. Then yesterday, as I was lying on the exam table waiting for the doctor, every time I opened my eyes, the walls were a different colour. Yesteday night, the photophobia started. (I need to make a photophobia tag…) The light from my cellphone, on its lowest setting, was excrutiating. Today it was just as bad.

I have my one window covered completely with layered curtains, and thumbtacks around the edges to keep them completely shut–the only light that enters my room is through the top of them, and I even have a towel over that. Just the few flecks of light that managed to escape through the top of the towel this morning were enough to make me roll back under the blankets in pain. I eventually got up and threw two more towels on it. After several hours in the dark, some ibuprofen, and some coffee, I am much better, hence the typing. According to my tags I’ve had this exact set of symptoms in April of last year (cough included!), and it was when I was (1) on Zithro (read as: Biaxin’s cousin) and (2) having one of my “these are strange symptoms what is going on” phases. So I’m going to assume this is Lyme or Mycoplasma, and just be glad I am on antibiotics to kill both of these beasts. :\ At my next LLMD appointment I want to start A-MYCO from Byron White formulas, too.

…And there we have it!

a rainbow at night

Another chapter in “ibuprofen always helps,” and the last of the 30-Day Challenge.

I have deductions to report! And photos of my random art and photography! Carry on if you’re brave…

 

Okay, so remember when I–… Actually, I don’t think I said that on this blog. But on Facebook or Twitter, I had mentioned being concerned that the Liver Chi, because it activates the immune system, might cause issues with the M.E., since in the past it’s been like this:

  • Take steroids → M.E. gets better
  • Take immune-activating anything → M.E. flares

So I was thinking maybe it wouldn’t be so bad if I was on the Nasonex at the same time, because they might cancel each other out, with the Nasonex lowering the immune system and the Liver Chi activating it. I started them at the same time and all was well. But, two days after stopping the Nasonex, I had M.E. problems. Coincidence, possibly; I’m not sure. But then this other thing started.

My heart palpitations went through the roof. From maybe one noticeable skip every other week to at least one every hour. :\ I was very concerned, and I thought it might be the Biaxin because it can disrupt one’s QT interval and I sometimes have problems with those medications. My heart beat had been unnaturally fast, even when I wasn’t dehydrated. It averaged about 112 when lying down completely relaxed. And the irregular beats, well… Very prominent, made me cough every time. (Vagus nerve, cough, heart rhythms, all that goes together.) Then one evening several days ago, I needed an ibuprofen for a headache. Just 200mg to start with…and I noticed I didn’t have a single heart palpitation the rest of the night! I thought that was odd… The next day I woke up and took my Liver Chi. My heart went to racing again. After about two hours, I thought, I wonder if I take another ibuprofen… And I did, and my heart rhythm went back to normal. So, the past few days I’ve been taking ibuprofen with my Liver Chi doses, and I haven’t had any problems.

Then today I thought, okay, we have to make sure this isn’t coincidence, so I didn’t take the ibuprofen with the Liver Chi. My heart rate started climbing again. I took ibuprofen, and again, it went back to normal. I have a cardiologist appointment in a week and a half to find out what’s happening, but…

Now I’m wondering, what is going on? Is my heart inflamed? Or my nervous system? What is happening that the liver chi causes a problem and the ibuprofen stops it, that connects to my heart and my heart rhythm? Is it M.E. related? Or something to do with the connection between NSAIDs and orthostatic hypotension? I’m prone to thinking it’s something inflammatory, because this only started after I stopped the Nasonex. But. I don’t know! I just had my bloodwork done so we’ll see how my liver enzymes are holding up next week, and then we’ll see what else happens between now and my cardio appointment. Maybe it’s a herx, who knows. :\

Also, re: Nasonex and my eye problems: Coincidence, because my eyes are still giving me problems. And re: Breathing issues, I have not had any of that since.. well, it continued on several days after my last post, and then stopped. Whether or not it might recur, who knows, but I haven’t had it happen since.

Another random problem I’ve been having is, once a week I involuntarily stay up til six, seven, eight in the morning, until I finally get sleepy and go to bed. I just don’t get tired, and nothing can make me sleep! After four weeks of this, I figured out it was the Flagyl, because it happens after being on it two or three days, of the four consecutive days I take it per week. A friend who was on Tindamax said it did the same thing to her. It’s funny because when I first started Flagyl, all it made me do was sleep, and now…

 

So my brain fog hasn’t been as bad lately! After I made that last post, things got better. Over the years I’ve noticed it seems to do this, cycle in and out; when it cycles out, I read tons and enjoy my brain functioning. I even took a test on my reading speed and got an above-average score! (You read 305 words per minute. That makes you 22% faster than the national average.) And I even passed the three questions they asked afterward! But you know the interesting thing? (And this is how my brain has learned to function over the years of losing regular short-term memory ability: Plasticity is amazing.) I didn’t answer the questions correctly because I actually remembered what the story was about, but I answered them based on what words I remembered seeing. Just an example of how the brain learns to maneuver around its deficits and try to figure out other ways to be functional. When I first took it I was excited because I thought it meant I had reading retention, but. I really didn‘t remember what I had read, just the words I’d saw. I took it again today and now I remember what I read, though! :)

Okay, now enough symptom recapping. I finished my 30-day Challenge. It only took me..almost three months, aha, but I still got it done! Here are some of my final pieces–just quick blobs of watercolour, really, with the occasional photograph. As always, click on “Permalink” when they open in the gallery, to read more about any piece you want.

 

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