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?”
Something I never considered the IVIG might do was the one thing I’ve diligently avoided doing at all costs for the past two years: Wake my immune system from its compromised state of complacence. Because that, in turn, as has happened every single time over the past six years, would reactivate my latent bartonella infections.
But that’s exactly what it did.
Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog since the beginning, but this short post from January 2012 might help a little.
I realized a year later that my symptoms were re-emerging and my bloodwork showed increasing signs. From then on I did everything I could to not stimulate my immune system, especially avoiding antibiotics at all costs (i.e., in the event I caught something extra; because as we know this entire treatment-failure conundrum was caused by me being unable to tolerate antibiotics to treat the Lyme, bartonella, mycoplasma, etc.). Because of this, and thankfully so, it remained somewhat latent in contrast to how quickly it spread the first few times it was active. From past experience, I’d seen that activating my immune system in any way triggered it to attempt fighting infections wherever they existed, despite my immune system not having everything it needs to actually fight, or even being able to use what it does have, efficiently. I’d found out the hard way that to reactivate bartonella was to initiate my imminent decline: The first time this happened, I was bedbound within eight months; the next, within just four.
Well. All the symptoms that have occurred periodically since the bartonella relapsed, are once again emerging VERY reliably every 5-6 days (usually five, as is part of the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before fading as quickly as it arrived; the worse “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Unsurprisingly, its pattern started five days after my first infusion in October, and has continued ever since.
A part of me just cannot believe this is happening again. The other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection.
The worst flares–the ones that scare me–happen right before my infusions, when my immunoglobulin levels are at their lowest. I get IVIG every four weeks, but at my current dose the effects only last three weeks… So the fourth week, my system has fallen back to its usual, immunodeficient state, which means I am at mercy of a potentially-fatal infection with little to give it pause.
I discussed this with my immunologist today and he has upped my dose. We’ll see with my next infusion if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\ (I hope not; I don’t know if I could handle that, mentally.)
I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than their office, and wasn’t even sure if I should go. But within two minutes of praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. For one, I was hydrated, but I also no longer felt like I was being mauled by a bear from the inside out. The flare completely stopped.
For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can now fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.
If I can continue getting IVIG reliably then maybe several months from now my new-and-improved immune system, thanks to literally thousands, upon thousands, upon thousands of donors, can finally overthrow bartonella (and maybe the other, less-rapidly-progressive bugs?), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path.
I regret nothing.
♥ a rainbow at night
My birthday was in August and it was incredible. Full of love from friends and family and the amazing gift that I was alive to enjoy it. I thanked my Lyme doctor for helping save my life, because without his aid I know I wouldn’t have made it. The whole celebration affair took two days to get through because I didn’t want to exhaust myself–I tried!–but let’s just say, next year I shall ask for more assistance, especially in opening gifts because I did the closest thing possible to arm-murder for someone with M.E. The eustress still affected me profoundly, and the muscle relapse I experienced took me weeks to recover from. By mid-September I did finally get to a place where I was okay enough to start typing, replying to e-mails, et cetera, albeit at a much-reduced level. I think that’s when I made my last “real” entry… Anyway.
Since my last actual update I have been “officially” diagnosed with vasculitis, upped my Biaxin dose, then had to stop everything completely.
After a necessary car ride (read as: hurricane evacuation) put me in the sunlight for eight hours, my sporadically-present vasculitis-of-the-past-ten-years went into overdrive and has been bothering me daily, often severely, ever since. I have to avoid all sunlight and any temperature change…which I always have to do, but right now it’s even more important. I did get tests to see if anything autoimmune had been triggered, but the tests, ANA and the relatives, were all normal, so that’s good. I got the diagnosis of inflammatory vasculitis on the 6th of September, which ironically was two days after upping my Biaxin to twice daily instead of once daily, but the Biaxin was unrelated, since the problems began days earlier with all that sun exposure. My PCP told me all the weird quirks I’d been having–the INTENSE dizzy spells, the blurred vision, that the main vascular problems were in my hands and feet–were all related. She said it starts in the small blood vessels–ears, eyes, extremities–and spreads from there, and to manage it with ibuprofen, which for now, mostly works.
We want to avoid going on steroids if we can, because of how they suppress the immune system… But I’ve been off and on Nasonex (an inhaled corticosteroid for sinus inflammation; I don’t have allergies) and it’s such a catch-22. I always feel better when I’m on it, but it also messes with my immune system so that other problems act up. Sigh.
For the most part I had been feeling GREAT with the twice daily Biaxin, but when I’m down, I’m really down. I have no idea what to say about my general health status, otherwise. :\ I always get a bad flare at the beginning of the month because this is one of the bug cycles (I think the Mycoplasma, but maybe the Lyme–I have no idea, I just know it’s not related to my menses because that has no reliable pattern due whatsoever, and hasn’t for years). Well, this month’s flare was absolutely terrible because of being on the doubled antibiotic dosage–“herxapalooza,” as one of my friends calls it.
When I was on Zithro (biaxin’s cousin), there would be one day a month I’d have to stop my antibiotics and let the herx die down, lest I end up it the emergency room. I came very close to going this month, not because of the herx itself, but because of a Migraine that was almost completely resistant to treatment. All I had at my house was off-brand medicine and name-brand Treximet, the latter of which I cannot take with my type of migraine (which I DID NOT KNOW–need to discuss this with my new neuro!). So it was bad. Bad bad. The aura began with an awful prodrome of Alice in Wonderland Syndrome on Friday (Sept 28th) and the Migraine began two days later on Sunday (Sept 30th). Another two days later it was gone, but I have been sicker than sick ever since.
I have stopped ALL of my antibiotics in an attempt to recover, and I’m planning to resume them Monday if I’m able. If not, I’ll give it another week like I sometimes have to do. It’s been four straight months since having to take any kind of break, so that’s good. I hope it’s just the herxing (my liver is fine, by the way!), because this is a little frightening.
I haven’t needed my wheelchair in months, so I put it in the closet. Then yesterday I went to stand up and almost went to the floor. I’ve had NO trouble walking in months. Now my legs are very weak. It just hits me in “episodes”–one part of the day I’ll be sort-of okay; the rest, I am useless. This would make sense if I were currently on antibiotics, but I am not!
I have been sleeping a ton, and in bed all day regardless, only getting up for the essentials like restroom. And the pain… Oh, the pain. A day or two ago–they all blend together at the moment–I couldn’t so much as roll over in bed without a dose of Vicodin. The “headache phase” (because that Migraine went on to irritate every surrounding nerve) has died down for the most part, but now I’m facing exhaustion, flu-like sickness, numbness in my right leg and foot, a bizarre action-related tremor in my left hand/arm that has actually been progressing instead of going away… I am hydrated but my blood pressure is poor, I am resting but my heart is weak… My heart has felt weaker the past several weeks, at random. I don’t know what that’s about (side effect of doubled Biaxin?) but my next cardio appointment is in November.
It’s just such a drastic change, and I was doing perfectly fine (relatively speaking) on the doubled dose of antibiotics until this hit… And despite being off of them, it doesn’t appear to be getting better yet, which is concerning when I’ve literally spent the past week in bed and usually this combination lends to me feeling better… Or at least, when it’s M.E.-related, this lends to me feeling better. I suppose, with that in mind, I should stop thinking of it in those terms, because even though the majority of my troubles the past month-and-a-half have been M.E.-related and those ARE improved with rest, these problems I now face probably are not M.E.-related, and therefore there’s no sense in thinking rest will help them.
Maybe I’m rushing things, or being impatient. I just wonder what happened that I’m taking so long to recover, and I hope this will all pass over without me being forced into a lower state of functioning in the mean time.
So as to my absence…! I have been doing mostly okay, seemingly doing much better–even starting to prepare my own meals!–until “this” happened.
♥ a rainbow at night
I couldn’t take it anymore and started my Zoloft…even though it interacts with two things I take. I opted to just take it as far away from those as possible, and since I’m only on 12.5mg, it couldn’t be that bad, right?
Best decision I ever made.
And something interesting to share about my fatigue: It’s incredibly reduced! My wonky brain chemistry must have been contributing heavily to it, because after about five days I noticed I had a lot more energy. Antidepressants are actually recommended for “chronic fatigue,” and now I understand why! I thought fatigue was only a symptom of depression-related brain chemistry, but it would seem it’s just a symptom of off-kilter serotonin levels in general. I’m pretty sure I learned that in my degree somewhere, but had forgotten.
My OCD is a lot better. The incessant thoughts are easing, and I no longer need to keep hand lotion around from my constant soap use.
I take Flagyl Thursday thru Sunday, and usually by Saturday I am exhausted. This Saturday? I exercised. And by exercise I mean my usual stretching routine that I used to do for Fibromyalgia treatment. I got through it all! And the next day I stretched again, but at a reduced level. Today I took a break from it. I’ll see how I feel tomorrow. But I’m in shock that I was able to do that! It’s a very good sign. I’m elated that after five months in Lyme/Mycoplasma treatment, I am starting to get back to things I used to be able to do. I’ve been incredibly blessed to have my family’s support, emotionally and financially, but all I want is to be able to take care of myself again. At the rate I’m going, I think that will happen.
Neurologically, I’ve had a lot more numbness in my limbs. This is healing, right? I get the “hot foot” sensations daily, my feet itch like mad (neuropathy), and.. I remember an instance last week where a sharp, stabbing sensation went through my right leg to the bottom of my foot, and my leg immediately went numb. When the neuropathy was progressing, things got worse, and in new places; this is more akin to old problems flaring up with their last dying effort, so again, here’s hoping this is part of the healing process.
Headache wise, I’ve had what acts like a tension headache for about four days, now. It makes my teeth hurt. I say “acts like” because I never get tension headaches, and I’m not entirely sure if this is one, but based upon descriptions I’ve read… Then again I’ve also heard people describe Lyme headaches like this, so who knows. It could even be the Zoloft or it may be as simple as ibuprofen withdrawal after taking it for several months. Whatever the cause, hopefully it’ll go away, soon. It’s the least of my concerns!
♥ a rainbow at night
The most important thing to report this time is that my random cough continued to be persistent and began to worsen, so I saw my primary physician who says I now have asthma. (Well, asthmatic bronchitis–two in one, aren’t I lucky!) If I were to assume this to be infection and/or herxing related, I would say this:
Since I’m fighting Mycoplasma pneumoniae, a bacterium that usually causes pneumonia (but also loves to attack your nervous system), my best guess is that treating this beast has caused a lot of herxing/die-off/inflammation in my lungs, where it’s most likely been hiding out, at least partially. And said die-off may be causing the inflammation that’s triggering this asthmatic response… I mean, it can’t be any coincidence that as soon as I start trying to kill the pathogen that has caused lung problems for me in the past, I get inflammation in my lungs. Right?
But if that’s not it, then I have genetics to thank. I’m going to go with “will hopefully go away as I treat Mycoplasma” theory until it proves itself otherwise. At least I’m not having any trouble breathing. I just have this cough, which, after three days on Dulera (which is literally just my Nasonex in an inhalable form…mixed with formoterol), I’m much, much better. :)
I’m convinced I had PANDAS (PANS) as a child; it just wasn’t a diagnose-able condition back then. If so, then I definitely still have it, because my body has clearly reacted the same way as an adult. This might sound like baseless self-diagnosis but this will make sense as I’ll discuss further below.
It stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections,” and is basically what it sounds like: An autoimmune response to strep that causes damage to the brain, primarily resulting in neuropsychiatric illness like obsessive-compulsive disorder and tic-disorders like Tourette’s Syndrome. (PANS refers to “pediatric acute-onset neuropsychiatric syndrome,” the same as PANDAS but without being caused specifically by streptococci.) In the “My Story” section, I ponder over whether or not something triggered my childhood-onset disorders of OCD and Tourette’s Syndrome, whether that might have been a brush with tick-borne infection, or something similar. After realizing there is an actual condition that does exactly this, it all makes too much sense:
- my primary immunodeficiency disease makes me extremely susceptible to infections (especially Strep)
- a history of autoimmune responses to things (like vaccinations)
- the fact that both my OCD and Tourette’s were acute-onset
- those conditions flare up whenever I get additional infections, especially bacterial
As Lisa Wolk-Kilion writes for one national magazine:
“Although the word ‘pediatric’ is in both names, it is surmised that the disease is not merely a childhood one. . . The encephalitic-type illness is brought on by an infection, resulting in antibodies that barrage the basal ganglia. … Once the autoimmune system is damaged, any germs can trigger a PANS flare.”
So, an autoimmune disease that responds to infection by attacking your own brain, instead. I was practically a walking target to get myalgic encephalomyelitis in the future, wasn’t I? :\
On that note, I have to state the obvious, that Mycoplasma and Strep are very similar in this respect: They usually cause upper respiratory infection, but in the immunocompromised, they can wreak havoc everywhere, especially the nervous system. You know what happened to me when I got both Bartonella and Mycoplasma a month apart from each other in 2008? My Tourette’s syndrome and stuttering flared up so bad I could barely talk for three months. I also got extremely paranoid, showing clear neuropsychiatric involvement. Additionally, that’s when my movement disorder began worsening. I had the beginnings of the dystonia since getting Lyme disease (even though I didn’t know I’d gotten Lyme, yet), but after those two infections, things progressed very quickly. (The Tourette’s and stuttering eventually died back down, though they love to pop up at random, especially when I’m under emotional or physical stress.)
Treating Bartonella helped the dystonia symptoms A LOT…a lot a lot. But the thing is, the antibiotics that treat Bartonella are the same antibiotics that treat Mycoplasma (or at least the ones I was on, except for Bactrim), so I have no idea of knowing which infection is responsible for it. It’s not gone yet (as evidenced by my oromandibular dystonia showing itself more lately), but the worst parts of it stopped progressing after a year on Rifampin (with other antibiotics).
This is one of the reasons I can’t type up a post explaining my Bartonella experience and treatment: Because even though I can pinpoint a lot of which symptoms were caused by Bartonella–especially the ones that recurred every 5-7 days–I have absolutely no way of knowing exactly which infection caused what, specifically in regards to my dystonia and other related movement disorders. Because I got those infections a month apart from each other, and I treated them both at the same time. I can type about my theories, but I can’t put a bunch of information out there that people are going to read, without being sure. All I have are correlations, and patterns, which I happen to have a talent at spotting.
Two years ago I hypothesized that Mycoplasma (which I easily tested positive for on the first try, unlike the others which I had to coax out with speciality labs) was going to play a much larger role in my health issues than I had at first assumed… I had no idea how right that would be.
[ETA 2017: It’s been 5 years since this post and Mycoplasma pneumoniae has now been recognized to be a determining factor in the diagnosis of PANS, which all these additional years of disease and severe psychiatric relapse have unequivocally proven me to have.]
“The association of mycoplasma with diseases like arthritis and chronic fatigue syndrome, which has been implicated with a response of the body’s immune system against its own components, is consistent with the growth and behavior of mycoplasma. The absence of a conventional cell wall allows mycobacteria to penetrate into the white blood cells of the immune system. Because some mycoplasma will exist free of the blood cells and because the bacteria are capable of slow growth in the body, the immune system will detect and respond to a mycobacterial infection. But this response is generally futile. The bacteria hidden inside the white blood cells will not be killed. The immune components instead might begin to attack other antigens of the host that are similar in three-dimensional structure to the mycobacterial antigens. Because mycoplasma infections can become chronic, damage to the body over an extended time and the stress produced on the immune system may allow other microorganisms to establish infections.
“Strategies to eliminate mycoplasma infections are now centering on the strengthening of the immune system, and long-term antibiotic use (e.g., months or years). Even so, it is still unclear whether antibiotics are truly effective on mycoplasma bacteria. Mycoplasma can alter the chemical composition of the surface each time a bacterium divides. Thus, there may be no constant target for an antibiotic.”
Mycoplasma Infections via Encyclopedia.com
World of Microbiology and Immunology | 2003, The Gale Group Inc.
If anyone has any experience or information they want to share with me about PANS/PANDAS or similar things triggering OCD and Tourette’s Syndrome, feel free to comment or contact me.
♥ a rainbow at night
Updated December 2015 to add helpful links about PANS/PANDAS
Updated May 2017 to add more helpful links and confirm diagnosis
I’ve decided to do things a bit differently this post. I’ve been planning this entry for four days, but I’ve been so severely confused and disorganized that it’s been a huge struggle! I did manage to scrape together some random notes for a private entry on Monday, so I can use those to help me. Several things to say this time around, but first thing’s first, considering the entire reason I have this blog: Symptom recap.
This has been the lightest Lyme flare I have had in months. I was not bedbound! I barely had any dystonia and I had no cardiac involvement whatsoever! I did get parkinsonism. But the main feature has been extreme cognitive dysfunction (brainfog, if you will). My eyes dance over words instead of reading them, my brain hasn’t been able to form sentences in the right order, and my memory is on temporary hiatus. I’ve also had moderate-severe fatigue, which was expected. I’ve fallen asleep numerous times during the day, and the fact that my sleeping has been so disorganized at night does not help. There’s been more difficulty breathing, and my herxing has been worse, which I seem to recall happening last month around this time as well? I did have a day or two where I was extremely thirsty, but I don’t know if it was infection-related borderline dehydration or Zoloft-related cottonmouth… And I had several “headache bursts” from the 19th-20th; it eventually stuck on Monday, and moved to my neck, so I needed Lortab and ibuprofen. My back was hurting, specifically my upper back (another Lyme trend–it used to be my lower spine, but more recently it likes to affect my upper spine), and I also had the strange arm numbness phenomenon that happens, with certain severe headaches. Monday night was severe as far as the dysautonomia is concerned; my tongue was completely numb, and my face tingled. I was also anxious, which tends to happen when the vagus nerve is being.. out of line. Sometimes when I digest, it can feel like an anxiety attack without the anxiety, if one can imagine that sort of thing.
Otherwise, I’ve been seeing things more often (again), starting at least around the 17th. There was a possible bartonella flare on the 19th-20th: I had a ton of shin pain, and moderate amount of foot pain. However, my legs were also sore in general, so I’m unsure if this cluster of symptoms was bart-related or just activity-related. That said, I also had the moodswings, the muscle spasms, and the frontal headache, so…
Being in the sunlight for five minutes on Monday started a systemic reaction that lasted all night, even with ibuprofen. It’s not arthritis or joint pain, but it makes it difficult to bend my joints, because it feels like something is tearing. My joints are warm to the touch. Does anyone else get that? It’s funny, because it’s a Lupus-like symptom, but I happen to be one of the people with (multiple!) negative ANA results! I find that ironic in a world where it seems like everyone with Lyme gets a positive ANA at one point or another.
Also, I’ve had tinnitus for a month now…at least, that I’ve noticed. There is always some type of white noise in my surroundings, and I’ve noticed for the past month that whenever it’s truly quiet, my ears are ringing constantly. They of course started doing strange things when I started the Zithro, and there were those couple of weeks when my equilibrium was completely off, so I’m assuming there’s some inner ear component to this illness. Who knows, I’ve always struggled with ear infections. It was even an ear infection that made the M.E. relape, as well as caused scarring from the persisting inflammation; truly, who knows! But I hope it’s not permanent!
I saw my primary physician on Monday, which is why I left the house. She was very glad to see the treatments are finally working for me; even she was starting to wonder whether they’d be worth it. She was pleased with the combination of medications I was on, also. She said Rifampin added to other antibiotics can increase the effects of those other antibiotics, so even a small dose is still like a superdrug. Makes perfect sense to me, and helps solidify all the things I’ve “heard” about Rifampin increasing the effects of other antibiotics: It’s true!
Now, would anyone like to see a few photos for a change? First off, about three weeks ago an “anonymous” friend mailed me a Giant Microbes plush of Lyme disease. I took a picture of him! (And eventually found out the friend.)
Then the day before, another friend mailed me a box of assorted presents, including a belated sugarfree Easter bunny! There was also origami (cranes in a box and one dragon), a gorgeous necklace, more sugarfree chocolate, soothing scented candles, and.. baby spirochetes!!
Aren’t they just adorable? I unraveled the one at the top to sling around a bit, ha! What I didnt include in the picture are the new notecards (complete with rainbow-esque case), but that’s because I was too busy using them to keep myself organized!
Also, the card has a Yorkie sticker on it. That’s because I have a yorkshire terrier/maltese mix (technically a Yorktese), named Muffin. My family has been taking care of her for the most part until just recently, when, with my improvement, I’ve been able to be more of a dog mommy to my own dog. She’s still growing her hair, but here is a recent picture of her!
It took so long to get a good shot of her–I eventually had to put the camera on the ground!
And one last thing. As a fair warning, please do not send me e-mails telling me how you do not “believe” in M.E., or chronic Lyme disease, or whathaveyou. I’ll simply block you, like I’ve had to do once already this week. (What a coincidence–or not–that someone found my blog this week by searching for “myalgic encephalomyelitis why no one believes my pain.”) It’s bad enough that I can’t talk to people with Lyme disease without them doubting that M.E. exists, and that I can’t talk to people with M.E. without them doubting that chronic Lyme disease exists. They BOTH exist. I had one, then I got the other; I am your proof. Do you have any idea how hard it is to get support in either of those communitities? And for that, I blame the CDC, for literally CREATING the category of “CFS,” so that people are forever being misdiagnosed with this catch-all syndrome instead of their real ailment, whether it’s M.E. or Lyme or cancer or whathaveyou. Like a friend said: If I had HIV, would people question that I couldn’t have HIV because I had Lyme, or vice-versa? No. They understand that they are distinct, both disastrous, and you can have them both. You treat them, and you do the best you can.
I’ve given everyone lots of accurate information about both M.E. and Lyme disease through the links on the right side of this blog. Please make use of them before contacting me about such offensive matters.
Until next time!
♥ a rainbow at night
Yesterday wasn’t as extreme, indeed! I recall feeling very fatigued and dizzy, and having “random” upper spine pain (which may or may not have been contributing to my arm weakness). After three days of minimal usage, said arms are doing better. Last night I even had an online chat with a couple of friends. The first true conversation in a very long time. Another one of my “moments” that let me know treatment is doing something.
As I’ve noted here before, there seems to be some correlation between my arm numbness (top of the right one) and the presentation of a severe headache. The headache started late last night, but not in my head. My neck became very stiff and I didn’t get to sleep until hours after I’d originally lied down to do so. This morning the stiffness wasn’t as bad (we’re not talking arthritic or joint related stiffness, here) but later on today I began getting the tell-tale signs of the Lyme headache. Lortab and ibuprofen, as usual, and I’m okay now. On the day of my last post, before bed I spiked a fever of 99.2, but as for now, I have none yet, despite the symptom flare-up. Odd.
Oh…! And I’ve been coughing. It started on the day of my last post, that awful day. Things like this make me wonder where the Mycoplasma pneumoniae is…
♥ a rainbow at night
I posted this on the 16th but made it Private because I couldn’t edit it. OCD and all.
April 16, 2011, 11:29 pm
Today was another very rough day. I only started coming around at about 10pm. The dizziness today has been extreme. My ginger gum helped, and ibuprofen was amazing. I had some chest pain but it wasn’t coming from my heart; it was as if something in my chest cavity was being stabbed? Perhaps some inflammation there. Very uncomfortable but with the ibuprofen it went away as well.
I did sleep better than usual last night, but I’m just so exhausted. I assume one of my bouts of fatigue. (I forgot to mention, my sleeping problems were apparently caused by sleeping with wires strapped to my chest; after the holter monitor came off, I slept fine.) One downside of a reversed sleep schedule is that people have to be active from 7-11am and they wake me up frequently, despite a fan for white noise and earplugs that either fall out or cause terrible pain from the pressure. One good thing, though, is that my schedule is slowly going backwards! I used to fall asleep at 5-7am at my worst, then it settled at around 4-5am, and right now I’m at around 2-3am! :D If I didn’t feel like roadkill in the mornings, it’d probably be easier to set my alarm earlier, but the first part of my day in general is just a mess…
I’d really like to know what is happening to me lately. The fatigue I feel is positively crushing; it’s so difficult to sit up, even to brush my teeth. I have to choose between eating and bathing again. Today I finally got a bath, and with a lot of ubiquinol I was able to eat my first meal of the day at 6pm. You can only drink so many Ensure drinks…! But I do feel stronger after the medicine + substantial food. (I lost another two pounds. :\)
I felt better two, three weeks ago than I do right now. I was able to walk. I was able to sit up and eat… And I can’t even remember the last time I sat up using my own muscles (without having to lean against anything) and ate food. It was shocking, and wonderful. But now?
I don’t know. Did I overdo it? Is it the Lyme flaring up? It’s the 18th and due time for it. Is it because I’ve been forgetting some of my supplements? I have no idea. My throat has some inflammation, I’ve felt very flu-ish at certain parts of the day, and the dizziness is extreme. Extreme. For all I know a random virus could be flaring because I keep forgetting my olive leaf extract.
When I was herxing the first time on Rifampin, I was incapacitated by fatigue. I can see in my health blog where I mentioned the 300mg I’m on is easier for herxing but still terrible for the fatigue part… So maybe that has something to do with it as well. I just hope whatever it is, lets up soon.
♥ a rainbow at night
Ahhh I’m sorry, I really have been around (i.e., on the computer), but I’m only capable of throwing out whatever words are currently floating around in my brain. My symptom chart consists of one-word descriptions, you know, and a blog entry… Well. That takes more. But I figure I’ll just wing it.
Let’s see… This is day six on the Rifampin. Good news is, I’m herxing! The bad news is, well, I’m herxing. It’s not comfortable but at least I had an idea of what might happen. It’s made things easier, and of course there are always pills… I also decided to STAY ON my Zoloft for the off-chance that it might actually help. I’m not sure if it has. On my “bad” days I just alternate between exceptionally-stable to exceptionally-unstable. Aha.
The most profound thing has been that 30-60 minutes after my antibiotic dose, I can no longer walk. This is a bit different from my usual wheelchair-dependent state where I can at least walk a few feet and sit down on the couch, and use the chair to help me get back or whathaveyou. This is more along the lines of, I must wheel myself to the door of the restroom, and I’m afraid I may fall during the short “dash” inside, even while I’m holding on to things. (My transport chair may be small and maneuverable but it’s near-impossible to fit through that particular doorway; grr.) So I’m effectively wheelchair-bound for the twelve hours following antibiotic administration. Late at night my ability to stand for a couple of minutes at a time gradually returns.
Other things that happen after my dose are:
- A few hours later, I get tremors and various types of uncontrolled neurological happenings: Sometimes the dystonia becomes worse, sometimes my muscles will twitch everywhere, sometimes even my Tourette’s starts to act up.
- About six hours later, the head pain starts. It’s like a throbbing-brain sensation and my eyes are very much affected. A few nights I’ve gotten through it, the others required Lortab and ibuprofen.
- Both of these things also happened on the Doxycycline, but at a much more extreme degree.
Need I say more about how glad I am that we took the “get the bart levels down first” route?
As to be expected, my moods have been more volatile. I’ve noticed when I wake up, I am very snappy and irritable and that.. is not like me at all. (Despite waking up feeling sick, I’m honestly not one of those people who wake up in a bad mood.) I’m dealing pretty well with those sorts of things, though! A couple of times I’ve suddenly told friends “I’ll talk later” to avoid yelling or snapping at them for no reason, but the fact that I’ve had enough awareness to do that, is great. :)
I haven’t gotten much depersonalization yet, but the derealization is getting more frequent and I.. wow, I hate that so much. It’s like you’re dreaming and you can’t wake up; you can’t understand why anyone is saying the things they are; you don’t understand why you’re doing any activity… Luckily, like the moods, it comes in “episodes” and I haven’t had a full day of it. (This is how the bart usually acts, anyway–relatively short “episodes” of altered mental status in comparison to just waking up and being in a daze all the time–so I guess it makes sense that the herxing is like that, as well.)
Other things that have happened are.. well, I really need to make it a point to say, again, that my legs are ridiculously more weak than my arms! That baffles me. I guess because I’m used to thinking of my weakness in M.E.-terms, which is more akin to someone who has Myasthenia Gravis: Whatever you use the most will be affected the most, and your actions are directly related to your muscle function. But with this, that doesn’t matter. Basically I’m just not used to having weakness that isn’t relative to something I’ve done. And while the majority of my leg weakness has previously been neurological, this weakness affects my muscles, as well. So it’s just something new to cope with… I think I’m doing fine with it, though. The first couple of days I went to get up to shuffle to the restroom and nearly went to the floor (ha!), but I’m pleased to announce I remember that my legs aren’t completely functional, now! (I can’t help but laugh; really, how do you forget something like that?) And if I recall, the weakness was a part of my last herxing, so, right.
That said–and coupled with the long break I took from the computer the week before–I’m able to type a lot more recently. :) Which is very “convenient” (i.e., a blessing), because I’ve obviously been spending more time online. Usually, I go sit on the couch for half an hour per day, collectively. I also make at least one trip to my mother’s room at the other side of the house. I’m adventurous like that, you know. For right now those things don’t happen, though I am able to wheel through the house a few times per day, if only to say hi to everyone, see my puppy, and “get some air.” I opened the front door today, and felt the outdoors, and it was nice. But because of the new fatigue and types of weakness, it’s more or less in my best interest to just stay in one spot and not move that often. Lest I anger the headache gods, or upset whatever semblance of normal my blood pressure has maintained.
Another thing I’ve felt recently: Sick. Not really “you have a neurological disease” sick, but “you have an infection and now your body is trying to kill it” sick. You know the feeling: Fever, feeling “clammy,” bouts of dizziness and motion sickness, joint pains and sore muscles, attacks of nausea. Just general sick. Nothing new, but for the sake of mentioning it…
Today I woke up mildly dehydrated, but–and here’s the kicker–NOT to the point of requiring immediate intervention! :) That’s a great thing. I’m in Lyme flare mode right now, so perhaps that’s why I woke up like that. My cognition is poor (but never underestimate the power of the ramble!), my neck is stiff and hurting, I’m having palpitations (though because of the Lyme, the mild dehydration, or both, I’m unsure), my arms have been going intermittently numb, and yesterday I actually woke up with some more-difficult-than-normal arm weakness. The POTS symptoms are a little angry, but again, dehydration is not my friend.
Well then! Right now my vision is rather blurry so that’s probably my cue to end this entry. I think that about covers everything. :)
♥ a rainbow at night