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

Symptom updates, new theories, and doctors; oh, doctors.

The headache got even more severe the next day, on my peak mid-week-flare day. It was just barely responding to meds. Not using my eyes helped it ease, and when I awoke Thursday, it was completely gone.

When I got that rash in July, it appeared then started to fade out, and another cluster appeared. But so far, I haven’t had any more “papular eruptions” yet (as the Burrascano guidelines refer to these bartonella-related things). Every time I mention these rashes, people tell me I should get checked for Rocky Mountain Spotted Fever, but I don’t see what the point. It seems obvious and I will always wonder if I’ve some kind of rickketsial infection, whether that be RMSF or Ehrlichiosis or flea-borne spotted fever, or any number of things. I did have antibodies to somethign like that. The treatment for all of them is one of the tetracyclines along with Rifampin. If I still have these rashes despite adequate bartonella treatment, we’ll know it must be one of those. But as it is now I cannot handle Rifampin with Doxy, or Mino, or Tetracycline without risking hospitalization, even if I have come really far. One thing at a time, as they say! So any RMSF testing will have to wait.

But someone did direct me to a photogallery of bartonella rashes, via this doctor’s site, a man who studies them and writes about them. He was actually in the Lyme disease documentary, Under Our Skin. One of the pictures really struck a cord–it was exactly the same as the strange scratchmark-like rash I got on my knee several weeks ago, that I mentioned last post… So seeing that, I think I have enough random information to compile a new theory!

I THINK: The bartonella quintana strain appears to be smashed, evidenced by my non-existant five-day-flare cycle and all of its previously accompanying symptoms, particularly the “temporary insanity” (i.e., violent moodswings). But when that ended, this other seven-day thing began. And my rashes started coming back. And old symptoms popped up. And I almost went to the ER again. I’m not sure when, but I know I wrote of it in my blog somewhere, exactly when that new seven-day-flare cycle began. I’ve repeatedly hypothesized that this is the bartonella henselae strain coming out, but now I think I may actually be right.

  1. I finally got the scratch-mark like rash on my leg that everyone else gets,
  2. it has a seven-ish day flare cycle like I have,
  3. the dots on my feet are bartonella, according to numerous sources, including my doctor, and
  4. the symptoms are still bartonella-like, just at a different interval and with different dominant symptoms.

So either that has happened, or something that acts like all these things but isn’t bartonella (a “BLO,” or “bartonella-like organism,” as so many physicians refer to it?), is attacking me right now, and that’s the thing we’re trying to finish killing within the next three months.

Further research via moi has confirmed that bartonella really does cause the type of general, terrible joint pain I was getting. The good news is: It’s gone! I’m no longer aching or feeling like my bones are going to snap. I guess the Bactrim brought it out of my joints, and for that, I’m thankful. My knees still intermittently give me issues, but I still think that’s the Lyme disease.

I’ve been very fatigued lately. I’m unsure why. I get short of breath too easily, and get a headache when I stand up (not adequate blood/oxygen/pressure in my brain?). But I’ve stopped coughing all the time, finally. I’ve not had fevers, but last Thursday my temperature was 99.something in the morning, at my doctor’s visit. I’m randomly nauseated, multiple times a day lately, and from Tuesday-Thursday my left eye twitched all the time. According to my blog, I posted on the 10th of October that they had been twitching frequently also… I don’t remember that, but that’s why I keep this blog! Ha! I hope it’s a herx from the Bactrim and not a bug trying to show. They haven’t twitched since April-ish.

The only bits of troubling news is, one, my neurologist is leaving. Yes, the one I loved so much, that took me a decade to find, someone who actually would deal with my complicated case and take me seriously? Sigh. I scheduled one last appointment with him next month before he leaves. After that I’ll be seeing his colleague, who I hope is just as amazing as him.

And my cardiologist wouldn’t give me the results of my echocardiogram over the phone. You know what that usually means… I’m prepared for him to tell me my valve regurgitation is worse (wouldn’t surprise me) or maybe something to do with heart failue (also wouldn’t surprise me). If it’s anything else, I have no idea, but I’ll cross that bridge when I come to it, as the saying goes. :) I see him on Tuesday. This might be strange to say, or even stranger to read, but even if something is wrong, I still think I’m incredibly lucky. I’m alive, and given my particular circumstances and illness combination (and the fact that trees really, really love me), I think it’s a miracle that I am here every day, no matter what.

a rainbow at night

Frustrated rambling: I simply feel sick.

I want to write but I’m not even sure how to start. My brain is not in a good-enoguh place ot make much sense. I’m frustrated. And I can’t tell how much of this is just my mood or real, honest frustration.

This is the kind of post I wuld keep to myself, but… I think it’s important to post so that others who see my blog don’t feel so alone. Hey, we all feel this way. So I’ll make it public.

First off, yesterday I felt.. really good! It was just a simple not-sick feeling that is pretty rare. I had enough energy to take a bath in the middle o the day. :) But I was also really, really moody, and I had a lot of random derealization. I don’t know why I bother to say “I’ve lost track of my bartonella flares” because every time I announce it, it’s like they hear me, and remind me. I was irrationally angry (and this was after finding peace with whatever issues had actually been on my mind!) and volatile for no good reason. My feet really hurt, particularly my right one. I had stabbing head pains. But no fever yesterday!

Perhaps I’ve been spoiled by how well I’ve been feeling. I felt really good when I recovered from the hospital in March. Then I entered three weeks of feeling horrid in April… Then I came out of it by May. Then the end of May come around and I started to feel horrid again.

Yesterday wast he end of my Lyme flare; my headache was compeltely gone and again, I felt good. Today has been the opposite. I was so out of breath for about three hours. It was scary. It wasn’t “air hunger.” If I had my oxygen I would have used it, and I think I needed it, because I fell asleep like I used to a long time ago when I was unware of the infections an dI couldn’t stay awake so I’d slip into this involuntary semi-coma because of my O2 levels dropping. Trying to move only made me further out of breath. I had not taken anything unusual, nor eaten a big meal. When I woke up, the “spell” had passed, and I’m not having nay trouble breathing otherwise. I’ve no idea what it was. It started at about 3pm and lasted until I woke up at 6pm. I’ve been in bed all day, too generally out of breath to stay upright.

I just hate being in this limbo and not knowing why, because then it becomes impossibel to figure out if it’s something I’m doing or something inward that I have no control over. I supposed the best I can do is just to do whatever I can correctly, and chalk the rest up to my body being my body… Perhaps I just got a little too excited with my last improvements, that things were going to keep being like that. I don’ tknow, maybe they still will…

Improvements, no more oxygen machine, and symptom recap.

I know not if it’s to do with this recent bout of occipital neuralgia (that left me completely by Monday), but my eyes are having a lot of problems ever since. Last night I had to go to the restroom, turned on the light, and started shaking from the pain it caused to shoot through my body. I’m always sensitive to lights but that.. that was something else entirely.

I’ve managed to keep some type of headache–whether it’s remnants from the nerve irritation I’m not sure–even when the majority of the skull-splitting pain has left. I’ve been seeing things. Lots of things. Shadows, bugs, black specks, colorful spots, dancing zigzags. I distinctly remember mentioning this in my video post from earlier this year, so I know it hasn’t been that long since these have flared up. I usually associated these symptoms with bartonella becuase it was when I got that infection (though unbenounced to me at the time) that I began to “see things” all the time.

As far as the bart goes, I’m not sure of my last flare besides around the 14th. Yesterday I was plagued by severe muscle spasms, there were the eye problems (they hurt so much upon moving them, even just to look around), and that night I had another terrible headache that was focused in the front of my head… Then today woke up very moody, nauseated, and no appetite… And by this evening all of that has gone away. Sounds typical bartonella-ish to me, particularly the muscle spasming, eye-related symptoms, and headache.

Other notable, strange symptoms are the heat sensations in my feet, and the facial grimacing…. Though, to clarify, it’s not as much a grimace as the muscles in the left side of my face just tend to go downward. I’m just not sure what else to call that? I think I had a worser cough yesterday as well. I mentioned my throat having inflammation and sores a few posts ago, and I’ve had a lot of throat pain focused around the lymph nodes the past two days. I take ibuprofen for this and it helps a lot, for the pain and for just about everything else.

I’ve been feeling better as far as fatigue and dizziness goes. I’m unsure of where those several weeks of dizziness came from, but… I’ve also been walking more! And today..  today! Today, at one point, I got out of bed and stood up and walked to get something. That’s from lying down, to walking, and I didn’t pass out. Now, at other parts of the day I attempted this, and let’s just say I was lucky my bed was behind me… But the fact that I was able to do this at all, is a great thing!

During my walking, my left leg begins to go dystonic, and that’s actually more of a hinderance than my blood pressure, lately. I’m unsure if it’s due to nerve damage or perhaps a minute oxygen imbalance because of me standing, that’s producing the dystonia there. It was one of the first places to get the symptom–even when low oyxgen wasn’t a problem for me–so perhaps it will be the last to leave?

Also, tomorrow the pharmacy is coming to pick up my oxygen machine as I haven’t needed it in two months! I ma so excited! :D I hope to never need it again. Next step: Get out of wheelchair, dare say I, completely?

I’ve been remembering to take my ubiquinol and olive leaf extract. That’s.. very important. Bad things happen when I forget them. You’d think after all these years I’d have learnt that by now, but… When the Lyme-brainfog caught up with me, I was forgetting things left and right. I think I’ll do another month of these low dose antibiotics and then in June, talk to my LLMD about moving up the dosages.

Oh, did I mention? I was tested for B12, B6, B1, and Zinc deficiency. All normal. And they YET AGAIN tried to get my Lyme and bartonella titres, but of course, nothing turned up, because I just don’t “do” antibodies. But! I’ve met my insurance deductible, so now I can get tested with IGeneX again! I’m excited to see if even more bands will show up this time. The first time I only had one band; the second I had five. I wonder what will pop up now, especially being on a cyst buster (Rifampin) that has released a lot of my initial Lyme symptoms? (That means the bacteria are active, which hopefully means my body will create at least a weak response to them, enough to be picked up by IGeneX labs.) This time I’m also going to do their Bartonella FISH test, their Babesia FISH test, and the PCR test for Ehrlichia and Rickettsia (the latter of which I truly think I have sometimes, due to the rash that was on my feet for two years). All I have to do is.. call and order the test kit! Which I should probably do tomorrow, hmm?

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