When the National Academy of Medicine (NAM, formerly the Institute of Medicine/IOM) released its recommendations for Systemic Exertion Intolerance Disease (SEID) as a replacement for “ME/CFS,” I saw a lot of people spreading this myth: That “post exertional malaise” (PEM) is what differentiates myalgic encephalomyelitis (M.E.) from other illnesses. This is not true, nor is this what’s explained in the NAM’s report. At most, the report says that the presence of PEM helps distinguish it from other conditions, while it is what best distinguishes “ME/CFS” from idiopathic chronic fatigue. PEM alone is not specific to M.E., Chronic fatigue syndrome (CFS), or SEID, just like unrefreshing sleep is not specific to any one disease. Continue reading “The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?”
Despite the fact that my brain has been functioning a lot better recently, I haven’t much felt like updating; completely the opposite of several weeks back, when I couldn’t think to save my soul but desperately had things to say! I’m learning a new language, so most of my spare brain energy has been going into that. This minor study will also help me decide if I may be able to attempt finishing my degree come next August. If I cannot, however, I think I’d be okay with just letting it go. After all, I do have at least one degree–even if it’s not what I set out for–and my health is too precious to waste on going to university to finish a degree I may never be able to use, and which may worsen me irreversibly trying to obtain.
I have fought too hard to get to this point, and I don’t want what society says I should be doing to dictate what would actually be best for me. I reject the idea that my only purpose in getting well should be to immediately resume the life I once had, or try to get it as close as possible. If I do reach the point where I am finally stable, I would love to try and finish and become a researcher. Or at the very least, a counselor. But that would take a lot of trust in the fact that I’d still be stable and healthy enough to actually do those things after completing my degree. One of the main reasons I’m disabled is that my symptoms vary so dramatically: I cannot reliably plan even a week in advance, much less years. So if I never again become well enough and well long enough for that, wouldn’t it be better to attempt some type of small job with the degree I already have, than to use up every bit of health I’ve finally gained, in pursuit of something that won’t do me any good? And even doing that would require much more health than just enough to make sure I don’t starve on my own, which at this point is all I can realistically expect, if anything. If I only ever improve enough to take care of my basic needs, I will be thankful.
Illness has taught me my worth is not defined by what I can do, how much money I make, what level of degree I have, or what job I have, if any, if ever. I am worthy because I am here, because I exist.
Okay, let’s see. From the 16th-23rd I was having a typical Lyme flare… How is it possible that this pattern hasn’t changed, practically since the time I got it? Is it really THAT predictable? But yes, severe headache and neuropathy issues, and I also recall being more cognitively impaired during then, as well as thirsty–again, all typical.
I felt it’d be okay to restart my stretching routine a couple weeks ago, so every other day I get some “exercise”! No relapse, yet. I’ve been able to cook a lot lately, also, which is encouraging. It’s still difficult and frustrating because my muscles fail the day after using them, but hopefully that will improve more, soon. If the muscle weakness got worse when I got these infections, surely it will improve as I continue to treat them.
Dare I say that the bartonella eradication is going as planned? The Bactrim is amazing, and I think the bartonella is.. well, it might be gone, or at least, finally beat into submission?! The protocol is to continue treatment two months past the cessation of symptoms. I talk to my Lyme specialist next month, so we’ll see what he says! Then I can start Tindamax to finally treat the Lyme disease! The antibiotics I’m on now do treat it, but only minimally: just enough to keep it from taking over. I’ll be stopping the Rifampin since I can’t take it with Tindamax, but I may stay on a maintenance dose of the Bactrim since bartonella has a crazy-high rate of relapse, and I do not want to go through this again. I feel I’m probably being unrealistic that I should never face it again, with the way my immune system is, but… For now I’d really like to enjoy my improvement.
Til next time,
♥ a rainbow at night
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 ehrlichiosis 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
This is my attempt at being productive today.
I’ve been doing well. The improvement I’ve experienced has allowed me lots of new priveleges. But much like what happened at this exact time last month, the combination of hormone cycles and Lyme cycles have brought me from Still doing good to I’m still connected to my body, right?
My M.E. has been acting up after pushing myself to write and not waiting to recover. Actually, that was probably just the icing on the cake of a bunch of little things I’ve been doing lately, and not waiting to recover… Typing a little. Writing a little. Taking a bath. Things people are “supposed” to be able to do. I honestly just forgot what would happen, since I’m always so careful. I remember, now. :\
So yesterday I took a day of forced rest, particularly for my arms. I was on the border of paralysis, a point I haven’t been at in a very long time. The rest has helped, but it will take a bit more to regain pre-exertional strength. Yesterday I was literally almost bored! I wasn’t tired, and my brain wanted to do things, but.. well, you only realize how much use your arms, when you can’t use them anymore!
My muscles have also been twitching a lot. And I mean a LOT. I have several episodes a day (especially at night), every single day, where it used to only happen during my bartonella flares. I’m assuming this has to do with all my muscle usage, since the majority of the twtiches have been in my arms. My calcium/magnesium/potassium, etc., are all fine, I know it. We’ll see where this goes, but I’m still assuming/hoping it’s because of the increased usage.
My daily bursts of headache are less severe (though this may be subject to change with my Lyme flare approaching). I still require ibuprofen every other evening… My voice is not accustomed to being used this much, so it goes out easily by the evening, if I’ve spoken a lot. But! I have my dry erase board. :) It comes in handy, especially when I can only whisper.
As far as my brain goes… For whatever reason, I’ve noticed that my brain functioning appears to be worsening, even though I’m improving physically. I’m really not sure why. (Could it be that I’m still increasing my olive leaf dosage? I’ll be at my usual 500mg twice a day by the end of the month.) But, it’s noted, so we’ll see what happens.
Oh! And my appetite is wonderful; I’ve gained two pounds. :) It disappeared today, but that’s normal given what has occurred.
I woke up in a state of utter exhaustion and feeling as if I were missing something, or just.. as I’ve said many a time, just didn’t have enough of something. With my menses having started several days ago, I assume temporary anemia may be playing a role (as well as with my muscle weakness). I’ve been awake 8 hours, and I’m finally able to move around, and, obviously type a little. I do not feel sick, and I have no fever. But sitting up made my heart rate spike like it used to, and my circulation was rather poor. I’ve subsisted on electrolyte water, Ensure, and homemade fruit smoothies via my mother. I’m feeling better now, and I hope tomorrow won’t be so extreme!
♥ a rainbow at night
I think it’s safe to assume I will not be taking any ambulance rides this month…!
I’ve been insanely thirsty today, which is a lot better than needing hydration and electrolytes and yet not getting the signals, I must say.
Also today I’ve been very arrhythmic, which is.. not exactly unusual, but an observation that I’m having it more. I’m unsure if it’s because of electrolyte imbalance or just what else is going on. A few hours after last night’s post the tachycardia went away, and today it hasn’t been high or low. Just.. not quite synched, as far as beats go. The first time I was on antibiotics I had endocarditis from the bartonella (and survived, ha!), and the resulting herxes were very severe. This is no where near that bad, so I’m thankful.
Doxycycline takes 10 days, at 100mg twice a day, to build up a constant level in your CNS. Just 100mg doesn’t do much, so starting from when I began the 200mg, this was day eight… Yay!
Everything from my shins down is very sore and weak, in a painful way. The ends of my arms have a similar thing happening but I can still type so it’s not that awful. Light fever. I’m slightly dissociated, a little moody (but not too bad), and seeing things out of my peripheral vision. Several hours today I became very weak, almost to the point of being unable to take adequate breaths; I thought that might be the point when things took their “turn” but I eventually came out of it, and here I am. :)
I am relieved.
♥ a rainbow at night