Appointment recaps: Pain management and LLMD

I may have to use the sentence structure of a five-year-old for this. Severe brain fog has kept me from typing my updates. But I may be able to get it done if I just try another way of speaking. I have a few sentences typed up from last week to go on…

Two weeks ago I set two new blog records. I feel special! :) Probably the most amazing thing about this is that my words reach people all over the world. Had you told me as a child, One day you will grow up and share your words, and people everywhere, in dozens of countries, will read them and be helped by them, I would have called you crazy. Technology can be so amazing, when used in a way that is beneficial.

I had my usual beginning-of-the-month flare, but I was able to get through it a lot better because I have adequate pain management… Or suffering-management, I should say. So much coughing, coughing, coughing. But my appointment with the pain management specialist went very well and I have what I need to cope. I no longer have to ration out meds and I think I’ve come to terms with being a chronic pain patient for the time being. As long as I stick to the schedule and not try to see how long I can last without them, I am okay.

I am able to stretch daily again, which is amazing and a big help. With continued exercise I should keep my muscle tone and gain more muscle stamina, which is really important because goodness knows what I face ahead of me.

I had my LLMD appointment but we didn’t have much time to speak because he is busy and overbooked. But I’ll take a twenty-minute appointment in comparison to no appointment. We really didn’t have time to go over much, but I have been given instructions to attempt Amoxicillin; do a round of Diflucan to make sure yeast isn’t a problem; and see a chiropractor in the event that it may help my headaches. I’ll make another appointment in January.

Right now I am taking Diflucan, one pill a day, which I can handle as long as I am properly medicated. And taking my probiotics to rebuild my poor GI tract while I’m off antibiotics. Beginning “next year” I shall attempt treatment again… Everyone is hopeful that,  just like being properly medicated is allowing me to take the Diflucan, that perhaps having adequate pain management will allow me to withstand Lyme disease treatment. I am hopeful, too… Patients undergoing cancer treatment get help with their intense pain and discomfort; why shouldn’t I?

I won’t be treating all forms of Lyme. Ideally I’d be on Amoxil PLUS Biaxin PLUS Flagyl and treat ALL the forms so it would DIE AND STAY DEAD… But if we did that I, too, would die and stay dead, LOL. And Amoxil doesn’t treat Mycoplasma pneumoniae at all. But, if it’s all I can handle…? If I even can…! But who knows, maybe that is what I need right now, to ONLY kill some of the Lyme. Just like in the past when my body couldn’t deal with killing Bartonella and Mycoplasma PLUS Lyme, maybe now my body cannot handle killing Lyme PLUS Myco. Maybe now, I have to get the Lyme count down before I can deal with the Mycoplasma… Who knows!

On the plus side, that paper that explained how well various antibiotics attack Lyme, said “amoxicillin reduced spirochetal forms by ~85% – 90% and [cyst] forms by ~68%”–so that is good!

I’m just trying to go with the flow and enjoy my life in whatever form it is available to me. If you’re reading this, have a blessed holiday season and treasure your loved ones. :)

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

Well THIS wasn’t supposed to happen so soon.

Being off my olive leaf extract has meant my brain is back to a constant fog. It’s funny, I’ve taken it so long that I really only notice how much it helps whenever I have to take a break for whatever reason. (With most herbs you’re supposed to take a 2-week break about every 4 months, so your body doesn’t become dependent on its effects and forget how to function without it.) Right now I’m breaking because I’m unsure of what effect it has on my liver (being such a powerful antioxidant, it should actually help, but I don’t know for sure), and I don’t want it to mess up my test results when I get my enzymes rechecked next week.

And being off any antibiotic whatsoever apparently equates to the Lyme disease moving to attack my arms. These illnesses have already done damage to my brain, cranial nerves, autonomic nervous system, legs, and now it looks like they’re moving somewhere new. As a friend pointed out, it seems logical that the bugs would try to get my arms, since they’re already weakened from the ME.

That week I was off everything, between finishing bartonella treatment and starting the Lyme treatment, the neuropathy spread to my arms. When I got on Flagyl, as I think I mentioned last post, everything stopped progressing, and I was fine. Now that I’ve been off everything again for a week, it’s going back to my arms… This is almost as disturbing as when the M.E. went to my legs–in other words, it normally doesn’t do that, and for it to be going there means a bad sign. (No dramatizing, just real facts.) I’m silently hoping it won’t do any damage before I get back on treatment. I didn’t think it’d have time to do anything, but with it acting like this…!

In the mean time, I have my B complex, and magnesium to help protect my nerves as much as I can… I stopped my Vitamin C because it can impact total biliburin count and mine is the very lowest at 0.3 mg/dL, so I can’t have that messing up my test results, either.

I know I have very little control over what happens, but the last thing I need is nerve damage to my arms, which already suffer so many restrictions.

Ah, and the point of mentioning the state of my brain, was, I’m still working on those posts I promised, but not much can be done with so much brain fog!

a rainbow at night

First post of 2012! (Some pictures, a painting, and a recap.)

Your 2011 year in blogging

A New York City subway train holds 1,200 people. This blog was viewed about 7,300 times in 2011. If it were a NYC subway train, it would take about 6 trips to carry that many people.

In 2011, there were 99 new posts, growing the total archive of this blog to 123 posts. There were 37 pictures uploaded, taking up a total of 6mb. That’s about 3 pictures per month.

The busiest day of the year was December 29th with 83 views. The most popular post that day was How I Forgave the Doctors That Called Me Crazy.

Well thank you, everyone! I’ve recently begun getting a lot of hits on my black bean brownie recipe, too? Who would have thought!

I hope 2012 will be a productive year. In just a few weeks I’d have completed my bartonella treatment, hopefully. More on that once I actually get there, but I haven’t–to my knowledge–had any reliable exacerbations every five days. ;) My LLMD was impressed, and said one more month of treatment, to be sure.

Okay, so I’ve managed to post about life lessons, recipes, and articles lately, without any mention of how I’m actually doing… So symptom charting, right! I had a mini-flare (???) around the 16-23rd of December but it wasn’t too severe–the main symptom was excruitiating fatigue. For the past five days (about) I’ve had lots of what appear to be Lyme symptoms. This is pretty typical since I often have a Lyme flare up at the beginning of the month. The “fire foot”/”hot foot” sensation, in my left leg. The “dragging left leg” thing, yesterday. Numbness in my left leg, and today in my hands. Facial nerve disturbance (pictures I take of myself during this scare me a little!). Severe cognitive dysfunction. Joint pain, nasty headaches (but none today!), worse fatigue, minor palpitations, internal tremor, eyes going every-which-way, seeing things, temperature of 99.5, complete lack of appetite, needing ibuprofen every evening. I stopped having headaches for I think a week…then they were back. The past week I’ve also found several bruises–one on my ankle, one on my shin, one on the back of my arm, and another on the back of my elbow on the other arm. One actually appeared on a day I know I didn’t hit anything, so I’m assuming them to be sporadic. Anemia-related? It took me about a week to recover from Christmas, but it went very well–I took lots of rest breaks!

Randomly, my new favourite thing to put my lemon juice in, is pineapple juice. Three ounces of pineapple juice (natural, not concentrate!), 1 or 2 tablespoons of lemon juice, and three ounces of sparkling water–detoxing never tasted so wonderful!

Also randomly: I’ve developed a new migraine trigger of…cheetos. Yes, cheetos. Apparently fake “cheese flavoring” is not something my brain likes. Nor is the sucralose (splenda) I found in my antacids, of all places!

Since my last ability scale checkpoint in October (which was right after I started Bactrim, but before the Lyme had a chance to hit me again) I have gone back down a bit. In general, I was thinking last week that.. as much as I hate to admit it, I think I’ve overestimated myself on the ability scales, out of genuine forgetfulness of what it’s like to be healthy. I have been ill for a length of time that begets forgetfulness about what normal people, with their non-diseased bodies and mitochondria, are capable of…
I remember enough to know that I could go go go all day then sleep it off and be fine; that I could lift things all day and just be sore from it, not experience muscle paralysis; that I could think about a tedious problem (technology or math) and not get physically ill from the mental exertion; and that I could keep things in my short-term memory for more than a few seconds. But for the most part, I forget that my level of improvement is completely relative, and that my 40% or 50% is completely different than someone else’s. Perhaps those who read my blog and happen to be less ill, or those who are healthy, don’t realize that, either. It might really become a problem if I were to tell someone in charge of determinig my disability status what level I think I’m at, because 50% recovered to me, just means being able to take care of myself and my basic needs!
None the less, since my last checkpoint, I am for now at: 15% physical ability, 15% cognitive ability, and 40% symptom severity. I’ll reiterate that bad days are worse, and good days are.. well, better/higher up on the scale. For instance, today I was up a lot more, and New Year’s Eve was also a better day in which I stood up a lot and didn’t need much assistance. But in general, this is where I am. I need caffeine to take all my baths, and even then they are often an immense task, but I’m just so glad I still have those options!

I’d like to end this with some pictures I took on a day when I was bedbound, as well as one I took when I wasn’t! Afterward, a painting I did a couple of weeks ago, when my days were horrible but, for some reason, I felt better for an hour or two each night (probably from resting all day).

Clicking them will obviously enlarge them in the gallery, then if you want to read more about a particular picture (or comment), click on “permalink” and it will take you to the individual description page. Happy New Year, my fellow spoonies!

a rainbow at night

So, is everyone surviving the holidays?

I’m making it a goal to NOT be hospitalized or require any emergency services this December, as the past two years haven’t been very kind to me. First a ridiculous bartonella flare, then almost going into probiotic-induced septic shock… Always within the week closest to my family celebrating Christmas! Well! I’d like to be able to fully enjoy my holiday season, and not have to spend it recovering from an exacerbation! I think I could probably handle a minor infection now, if it passed my way, but it still wouldn’t be without consequence and it’s something I want to avoid if at all possible. Family members have colds and sinus infections, but I have face masks! I joke about drawing hearts on them to make them more stylish. If Japan can do it, why can’t I?

So that Lyme flare got pretty bad. My muscles twitched constantly, and I soon started getting the internal tremor–the sensation that your entire body is vibrating, and that’s a Lyme symptom I haven’t had in a long while. I experienced severe muscle weakness in my legs for several days in a row and was wheelchair bound most of the time, even though using it was almost impossible. (I may or may not have mentioned, but I use a transport wheelchair instead of a normal self-propelled wheelchair. It doesn’t have wheels on the sides, so I self-propel with my legs, which are stronger than my arms because I don’t use them as much… That probably makes little sense, but when you have M.E., the muscles you don’t use very often are actually the strongest ones, and the ones you use the most become the weakest.) I remember starting to become concerned about it, but as the flare lifted, so did all the neurological quirks. A few days ago I went to the store without any assistance from mobility scooter or even a cane–a stark contrast to the previous week! My cognitive abilities have been poorer than usual, but these things go in cycles (every three weeks, remember?) so I may just be in a poor-brain stage. Since the flare though, I’ve had an increasing amount of headaches… I’m not sure if this is a three-weeks-of-headaches thing happening, or if it’s because of me not treating the Lyme, or what, but if it doesn’t lift after I begin specific Lyme treatment, I shall need to see a neurologist. Or perhaps I’ll just ask my LLMD next week when I speak to him, and see if he thinks I should go now…

It’ll be hard to decipher what is what, since I KNOW my headaches are going to explode once I start Tindamax next month. I told my primary doctor today about everything, and she’s excited about me starting it because of the recent in-vitro research that showed Tindamax kills up to 90% of both round (cyst) and normal (spirochete) forms of the Lyme bacteria. She also armed me with a new bottle of Lortab, so I’ll be ready for the insufferable headaches.

I have to write about a small bit of worry I have, though… On the 5th of December I got a severe headache, and that day I awoke with a bump on my finger. This is usually something I’ve associated with my bartonella flares, in the past… Then on the 10th, I got another bad headache, but I’m not sure if there’s any determinable pattern because that’s also the day I started M.E.-flaring from the trip to the store two days prior. :\ Could these finger bumps be Lyme, instead? And I HAVE been a tad more irritable, but again, nothing that screams bartonella at me… I’m just very wary of anything forming a pattern that would suggest it may not be disappearing afterall. I sincerely hope it’s just other factors. I’ll know as time passes whether or not things are being reliable enough to consider a threat.

Well, that’s all for my update right now, though I’m sure there’s more to be said. Oh, but I did update my picture on the right of the page. :)

Take care, my dears.

Keep going. No matter what you do, no matter how many times you screw up and think to yourself “there’s no point to carry on,” no matter how many people tell you that you can’t do it–keep going. Don’t quit. Don’t quit, because a month from now you’ll be that much closer to your goal than you are now. Yesterday you said tomrorow. Make today count.”

a rainbow at night

Small note.

This is just a note to say I.. well, I have things to say. A review of my cardiologist appointment from last week! And I have a neurologist appointment on Wednesday, which will necessitate an additional review! But I have been very ADD lately, to the point that I just can’t update with more than a few sentences before all my thoughts, words, and typing get scrambled, and my brain moves on to something else. Usually it lasts a few days then I’m back to (my version of) normal, but it’s not happening this time. Every few months my brain takes a vacation for weeks at a time, and I guess this is one of those times.

Good news? My weekly flares are getting better. Much, much better. Bad news? It seems I’m in another bout of three weeks of headaches. Did I say that before, or just think it in my head? But this is nearing the end of the three weeks, so that should be gone soon. I successfully weaned off the Topamax with no issues, but after a sensory overload incident I got one today (I think?) so I may need to have a back-up medication to start, in case they become weekly again. Something to discuss with my neuro this week.

I’ll update soon, whenever my attention span returns! My apologies, but you know how these things happen!

a rainbow at night

Lyme flare recap, pictures, and a small rant

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!

If you rememeber me briefly mentioning Zoya Nail Polish in my first video post, I believe I was wearing Yummy. I recently applied it again (just one coat, though) and thought I’d share. I’d like to start encorporating more of my “real life” in this blog (things that don’t revolve around symptoms and disease advocacy) as hopefully, with my improvement, I’ll have more of that to share.

There’s still a health-related hook, though. The main reason I love Zoya–beside the fact that they are free of dangerous chemicals, particularly camphor, whose toxicity can be inhaled–is that the application lasts so long. No more chipping in just a day or two, ladies (and the occasional fellow); with Zoya I can use two quick coats and have it last all week. It’s become a ritual of mine that helps brighten my mood and my self esteem. If I cannot do it myself, a family member will help me, but every Friday night I redo my nails, as I briefly mentioned long ago in my How to Deal with a Bad Day post. :)

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

A monumental moment!

Well, the beginning-of-the-month flare might be vanishing, but perhaps it’s not completely gone yet.

For the past two day (prior to today), I was having that left-sided “fire foot” sensation. I imagine people with peripheral neuropathy will know what I’m talking about. It’s as if you’ve momentarily stuck your foot into a fire, hence, “fire foot.” It usually occurs during my Lyme flares, but I’ve heard a lot about it concerning bartonella, which has an affinity for the feet, so I’m not positive. Also, my brain fog for the past.. I’ll say four days (again, prior to today) has been ridiculous. I’m usually ten times better cognitively, while on my olive leaf extract, but not even that has been able to save me from whatever’s been happening. The main event of today has been more peripheral neuropathy, but of my left arm and hand, to where the skin feels raw; even the sensation of water was painful. So highly uncomfortable, but I’d like to think it’s happening because the bugs are being killed there. And that’s about all. Some “leftovers,” if you will, but this is still a great step up. I can’t wait to see what doesn’t happen by June! :)

Neuro status: I’m still seeing things, but not as much. My face still tries to slant to the left every now and then. I’m still struggling with dystonia and parkinsonism, but it’s no where near as severe as it’s been in the past. I now only have an action-oriented tremor instead of a constant tremor. I’m still having autonomic neuropathy with my vagus nerve, but it’s so much improved I only notice during a larger-than-normal meal.

So, on Tuesday we went to Walmart. It took everything I had to get out of the house. My supplements, Ubiquinol, a good prayer, some meditation, and Vicodin. (I can’t have caffeine, if you’ll remember.) But I did it! Then Yesterday I “payed for” it with a crash. Then today, after a whole bunch of rest (and ubiquinol) to help the crash, I was mostly recovered! (I cannot, cannot, cannot stress enough the value of Ubiquinol or Co Q-10 during this. I just can’t. If you’re reading this blog and you have M.E., or even if you have Lyme, you need to be on this supplement. It is worth every dear penny.) So today, being recovered, we had a few more places to tackle. Post office. Dog medicine. Dog food. I got out at two of the places, with just my cane!!!

It’s the first time I’ve been in a store (or any building) without my wheelchair, since last year.

I’m slowly but surely accomplishing my little to-do list! This morning I even brushed my teeth and washed my face, while standing up! *waits for the resounding gasps*

Oh, treatment is working.

a rainbow at night

I didn’t forget

My my, journal, I’m sorry for abandoning you. I have been sicker than sick lately, with one day of goodness that I used to leave the house with the help of my mother and do some grocery collecting.

It’s obviously too late to report specific symptoms, but in general… Well, my memory and brain function are fairly poor. Today I had my first dissociative incident. I’m hungry again, which is a good sign, so I eat (or drink Ensure) more frequently. I’m out of my wheelchair more, which is another good sign. No problems at all with any yeasts, candida or otherwise. But I’ve been mostly consumed by dizziness, nausea, headaches, and a feeling like my body is just shutting down. I’m sure it’s really not, or else i’d just continue to get worse instead of having moments of reprieve, but for the past several days this has been what it’s felt like. I”m exhausted, going into states of being half-asleep several times a day with no warning. I halfway wonder if they’re seizures. The dysautonomia has also been bad because I’m having terrible trouble with bloodflow and subsequently being unable to move; it takes all my willpower to move my hands and/or feet to keep circulation.

Yesterday was a bad bartonella day. My Lyme flare came a couple of days early as far as date-wise, and wasn’t too terrible (or at least, not that I can remember). The left side of my face is becoming.. more “involved.” Today my breathing muscles became involved in my weakness again; my legs also stopped working due to muscle issues. Mum had one moment of having to make sure I was still breathing… The latter part of today has been a small bit better, at least enough to attempt an entry.

There’s so much more I would say, but I can’t. I have neither the words, descriptions, nor available muscle energy to make that happen. I had some friends come to stay here, and they saw me for a few minutes in the process. It wasn’t much and I think that’s probaby for the best. Another friend my mother saw up in town asked if they could come drop by and see me soon. Another friend knitted me something since I love tea so much, and I just got it in the mail today… This support means so much, especially during my ‘moments’ when the infections try to make me think no one cares if I’m here or not.

I know this is vague and confusing and probably won’t even be useful to myself later (whcih is the main resaon I have this blog), but… It is what it is.

This is me trying to make a post… A make-up post!

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