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

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

Mini update, post-hive.

…Well, I have been coughing a lot, and I am very weak, but whether or not that’s because of spontaneous-flare, who knows!

I’m effectively bedbound again. I very nearly was yesterday, too, but I didn’t seem to get the memo that standing was very bad until almost passing out after answering the door. My heart pretty much said that was the last straw: You are going to lie down, or else.

So yes, my heart feels weak, and that’s my main problem. I’m more or less very stable as long as I’m in bed, slightly propped up. But anything else is met with a pain in my neck and an inability to breathe. I tried wheelchair-ing but that still causes those issues, so I’m only using it to get to the restroom. I’m also craving certain foods so I might be experiencing anemia, which would definitely not help. I do get anemic with flares so that would make sense… Hmm.

But as long as I’m lying down I am not in any other discomfort, which is nice. No nausea, no headache, no dizzyness, no palpitations, no dystonia… The most I have going on is minor nerve pain and brain fog, which is none too bothersome. My nervous system appears to be responding normally to things today, as well; and if it starts to act out, I have a cup of coffee next to me to take a few sips.

I have been listening to the pouring rain for about an hour and it is just magical.

a rainbow at night