The Path of Least Disruption

“You don’t have time for perfect,” reminds Elizabeth Gilbert in her book, Big Magic.

I’m still alive. And one of the reasons I haven’t been around is because I knew when I returned, I’d inevitably hear about all the people who were not. That might sound a bit crazy, but, even when I’ve taken a month long break, anywhere from 3-6 people in our community will have died. With the winter stretch of the year always being the worst, I can only imagine who we’ve lost, now.

I don’t know how anyone is supposed to be okay with this. No one can possibly be okay when the only people they can truly connect with are those with similar diseases, and then to continually, year after year, watch all those people keep dying. Or otherwise become unable to communicate in a sort of living death, something that happens all too often in my communities. How do you not develop some type of complex around this? How do you deal with the constant stress of knowing that any time you go to make contact, there’s a 50/50 chance you’ll be knocked out by grief for weeks by the death of yet another friend? If anyone knows (and most do) what it’s like to live with a loved one as they’re dying, it’s the same fear you feel that the next time you enter the room, they will have already passed. That’s been my reality for years now, and I feel backlogged with grief. This can’t be healthy for anyone.

I’m 100% out of the loop with everyone. It’s as if I ran off to meditate in the remote forests of India for six months without telling anyone, and just got back. I haven’t been in a position to be anyone’s friend, as cold as that might sound. Or maybe it just sounds honest. There’s a family that needs me here; to coax them away from their fears by being their voice of reason, which is really just their own voice that they haven’t yet given themselves permission to hear; to nudge them towards seeking help, seeking God, and taking care of themselves; to fight for and protect the needs of the children, who might otherwise be overlooked; to show them the possibilities of loving life even when nothing goes the way they expect, or desire; and most importantly, to lead by example that you can face life exactly as it is; it might not feel great, and you will probably feel overwhelmed for large stretches of time, but it’s possible. The pain of facing the hardship of life is far, far, less than the destruction of a lifetime that comes from trying to avoid or ignore it. I’m so glad I’m able to be this person, still, for those in my immediate vicinity. But with the condition I’m in otherwise, it’s both the least and the most I can do. My cup is always full, and any spare “spoon” I pick up I try to use doing something I enjoy so I still want to keep living. So far so good.

"If you can sit quietly after difficult news; if in financial downturns you remain perfectly calm; if you can see your neighbors travel to fantastic places without a twinge of jealousy; if you can happily eat whatever is put on your plate; if you can fall asleep after a day of running around without a drink or a pill; if you can always find contentment just where you are: you are probably a dog." Jack Kornfield, A Lamp in the Darkness: Illuminating the Path Through Difficult Times (2011).

Of course, when I do feel happiness–which happens more often than my serious, direct style of writing here belies–I’m immediately courted by survivor’s guilt. I’ve come to accept those intrusive thoughts for what they are–mental lies–and try not to take them too seriously. I know they’re a sign I need help, which I plan to get, somehow. As I keep saying: I won’t abandon myself. I just wish it didn’t feel like I had to abandon so many others to get through my own life, at the moment. I might be pouring too much thought into that, but that’s just part of who I am.

Lately, most of my attempts at self-compassion immediately detour to shame and guilt. Only after meditation did I even notice this had been happening. One moment I was feeling gratitude that I was able to wake up and listen to music for an hour and meditate, the next I was thinking of children in war zones who can’t do that, and people with illness so severe they can’t listen to music, and my brain’s idea of logic was that somehow me being able to do those things makes me “bad”… Because of course, me feeling guilty over the things I enjoy will help other people feel better, you see. Sigh.

My succinct, “life lessons style of writing” was never something I planned to do, but the extremes of my life birthed it. What I’m going to try to do now, is to take my site back to old school journaling. If you like to read that type of thing, read it. If not, don’t. I’m still non-existent on e-mail and social media for right now. There are “good days” and “bad days,” good stretches and bad stretches.

“Needing to isolate has to do with us, the sufferers. Pushing you out of [life is a] way to have some control over what is going on… We can’t handle the shit going on with us when people are always present, adding little things to the swarm going on in our heads. Sometimes it’s just too much and having people around, especially the ones we really love, it adds to overload. We get feelings of insecurity, worthlessness, and don’t want to put that on others. Being in a relationship with someone with PTSD means understanding a sufferers need to isolate, and all the other shit that comes along with it.”

via user “silver.” on MyPTSD support forum

With a few exceptions, this level of distance from others has been the case for me basically all of 2016 and thus far this year, after a period of extreme acute stress in late 2015; the straw that broke the camel’s back and turned my solitude into survival. When I read that bit above, it’s spot-on about how the presence of people, even people we like, somehow adds “little things to the swarm” of mental overload. Just asking me a question can cause my thought process to short-circuit, but it’s impossible to describe why. I know how I feel inside, and what I think inside, but getting that across is another thing entirely. It reminds me of a certain interview with Whitney Dafoe before he became 100% bedbound, where he said he wished sometimes he could just be around his loved ones without them talking to him, if they could just let him be around them without actually interacting, he’d enjoy that very much. I enjoy that immensely, as well, but it’s nearly impossible to experience unless you’re with another Buddhist or on a silent retreat somewhere.

Last Spring I got to thinking I was just in a rut, so while having a good spurt, decided to force myself to socialize in the event it might help. But while I enjoyed myself at the time, it backfired spectacularly. Even that which I actually want to do, accumulates into a ticking time-bomb of how long I last before I need weeks of isolation to counteract it. This has been worsening for years, and after the flood… I just don’t know.

Louisiana Flood Damage Debris Pile, Before Pick-Up © a rainbow at night, 2016

It’s taken me years to realize that what I’m doing is a response to something else that’s happening internally, that I’m not just choosing to do this because I feel like being alone. I do enjoy being alone, and I will always make the best of things even if I can only tolerate my own company. As I read somewhere and found quite truthful, sometimes the fight to fit in becomes worse than the illness. But enjoying solitude is not the same as wanting to socialize and engage with your community, and care for the friendships you’ve cultivated, and in fact even knowing you need to socialize because isolation begets all sorts of awful things, but then being completely cognitively stunned by the first response you’re required to generate. I don’t know what’s happened, I don’t know why this is so much more difficult than other mental tasks or why it affects me so profoundly, but whatever this is, it is very clear to me now that it isn’t just some preference. And I have to stop beating myself up about it. I can’t be the only person who goes through this. In fact, I know I’m not.

The gist of it is: Sometimes interacting makes me worse, but sometimes I can handle it, and there is unfortunately zero difference in how it feels to me at the time, so absolutely no warning I can give if a disappearance is about to happen. It’s like trying to predict when my OCD or stuttering will suddenly worsen. Or like asking someone with RA or Lupus or MS when their next flare-up is due. It just doesn’t work that way.

Because of this, I’ve noticed it’s started to become self-perpetuated, also. There have been times when I wanted to finally reach out, only to then stop myself because I feared so much being unable to continue the momentum; that I’d just end up disappearing again. It’s my way of trying to minimize the damage of suddenly disappearing around people I thought I could keep contact with. I don’t want to hurt anyone, but this is all so unpredictable, so that feels inevitable. As one person said, “Who the hell wants to be around a touchy individual who tends to disappear off the map for reasons most people cannot fathom?”

© a rainbow at night

When I write this, and really look at it, I find compassion for myself in dealing with multiple, multiple diseases–of brain, of body, of thought–that make isolation my current reality. Being in stillness was, and can be, very therapeutic. I can find acceptance for where I am, and others tell me I’m some sort of inspiration for finding a way to enjoy life despite all of this, but I still end up thinking about my inability to be what others want, or need, or deserve. On top of it all, maybe I’m also grieving yet again for the loss of my former self, this time the person I used to be just a few years ago, who was able to engage with the world. Everyone I met, even strangers, would tell me that they could somehow feel my love for life when they were around me. And now…

More to say about my brain, so switching gears. Sort of.

Opportunistic infections are something I’ve been dealing with constantly since the flood. Skin infections, fungal infections, follicle infections, eye infections, repeated ear infections, repeated sinus infections, gastrointestinal infection from probiotics because I accidentally ate yogurt more than once… Then my seasonal winter relapse, followed immediately by a major health discovery that I’ll have to talk about on a different day.

Right now, I’m being worked up for multiple sclerosis, and/or increased intracranial pressure (aka intracranial hypertension), or both, or who knows what. Two doctors have confirmed my optic nerves are very pale and not getting adequate blood flow (suspected papilledema). My neurologist thinks this is because the pressure around my brain is.. well, pressing on things, and causing a significant amount of my symptoms. Yesterday I got a shit ton of bloodwork to make sure my kidneys can handle upcoming tests, then I’ll be getting another MRI with contrast, and an infrared-assisted lumbar puncture (spinal tap), both next week.

Much of the time I can literally feel a pressure in my eyes. Then with my ever-present headaches, the vision problems, worsening dizziness, tinnitus, and photosensitivity, alongside my significant changes in personality and cognitive decline, intracranial hypertension seems a given at this point. If confirmed, it will then boil down to why is it happening. There are endless suspects. I wonder if the IVIG may have either initiated this, or worsened something already in progress, because a lot of the changes I’ve experienced started immediately after that. Not that I’m complaining, because even if it did contribute to this, without the IVIG I would not have beaten the bartonellosis, or even be here to talk about this. I also wonder if the Lyme disease has any role, because while I haven’t had the symptoms I used to associate with it, these things currently happening are pretty much exactly what happens in late stage neuroborreliosis, which still, no ones knows whether or not is curable. You’d think it’d be as easy as checking for bacteria in my cerebrospinal fluid, but system-wide, borrelia prefer body tissue to hanging around in fluids where they’re more vulnerable. It’s almost impossible to tell what’s caused what, at this stage. And who knows, it may be something entirely new.

"I am scared. I'm scared that I don't know how many more good days I'll have. I'm scared of what this illness means, and I'm scared of what I know it can do to my life and my body. I'm scared that I'm not spending enough time with my family, I'm scared that I'm not telling the people that I love what I have to say and what they need to hear. I'm scared that I'm not living my life to its full potential. I'm scared that at any given moment my health could take a drastic turn in any direction that it wants to, and that it's out of my control. But no matter what happens to me, I know that my fears are because I care, my fears are because I still have good things in my life. I'm scared because things matter, so maybe it's not so bad after all." By @mrswelches

As for multiple sclerosis, I already meet all criteria for it, alongside a significant predisposition to developing it, so an official diagnosis could be imminent… But again I wonder how one would differentiate that from everything I already have going on? We shall see. But until the results are in, my IVIG infusions are on hold, because the possibility that an immune response to the blood product or a reaction to the intravenous fluids could worsen the pressure in my skull is too risky, not to mention getting others’ antibodies infused into me could alter my own test results. And “you have to do another spinal tap” is not something I ever want to hear.

I’m not going to say I’ll keep posting, because I’m not sure that I will, even if I want to. I won’t say I’ll try to get back to replying to comments and emails, because even though I want to, I’m not sure that will happen. I just know that I’m here, I’m posting right now after a huge effort to accomplish this, and despite 1000% evidence to the contrary, I still expect good things to happen in the future. Until next time…

Kit

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IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.

[estimated reading time: 5 minutes 12 seconds] © a rainbow at night
After almost seven years with this infection, I think the bartonella may be gone for good.

If you recall from this previous post, I talked about how my health was either about to nosedive, or finally overthrow this infection thanks to the millions of antibodies I now get infused into my body every four weeks (certainly many of which are bartonella antibodies, since this bacteria is so common)… Guess which one happened? Continue reading “IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.”

The Killer in the Crowd

♪ “Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

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 Tonsil Got Me Potentially-Life-Altering IVIG Therapy.

And here’s how.

Intravenous immunoglobulin (IVIG) is a human blood product produced by filtering the antibodies out of thousands of plasma donations–usually over 10,000 per dose–and supplying them intravenously for the treatment of immunodeficiency, immune-mediated neurological disease, and dozens of other serious illnesses.


I guess the story starts several months ago, when I began contemplating seeing my immunologist again to have my immune function retested. Not that long after, I began getting spots on my tonsils, which, after having some lymph node pain in my neck with ear pain, I figured was the result of an ear infection trying to push its way through; the tonsils are lymph nodes, after all.

After my ear improved with tea tree oil drops for three days, the tonsil spots proceeded to go away…and then come back worse. There I was thinking my immune system had won against something, but no! Accompanying this, my neck and face felt like they were on fire, and I had stabbing lymph node pain from my face to my right arm all day. It seemed to irritate the previous nerve damage in my face. (And mind you, I’m already on ibuprofen and percocet daily–the pain was going through them.) I wondered if I hadn’t gotten some type of stubborn virus, began to worry, and decided I needed to make that appointment because I couldn’t handle this one on my own anymore. And getting that appointment went something like this:

Mentally pair my current problem with having wanted to get my immune system checked, anyway.

Decide that’s perfect, I can do two in one; have a great feeling about that.

Call to make an appointment and find out my usual immunologist left, so made appointment with new woman in the office. Suddenly start to feel uneasy that I made that decision while distracted by two people in my car.

Call back to inquire about which immunologist in that office likes complicated cases, because I am one. Receptionist says she doesn’t know, but the one I just made an appointment with was available more (in town more often), so that might be something I could consider; I say okay and hang up.

Still feel uneasy and have nagging intuition that I should call back AGAIN and take the cancellation they’d offered for The Other doctor, even though it was two days later than the one I’d just made and I was really hurting.

Try to find an explanation for this intuition (because I just like to have explanation for things, if I can); begin doing research. Find out the Other Doctor loves complicated cases, AND he has thirty years experience, AND he’s the same doctor I saw twelve years ago at the onset of the M.E. (who helped me even without realizing it by giving me a steroid to slow down the initial inflammation).

Immediately called back for a third time that day to take the cancellation/the appointment with this Other Doctor.

Finally feel at ease.

I felt utterly ridiculous calling back so many times to change appointment dates and doctors, but: Intuition over feeling silly for a few seconds. The strange thing was that when I called to change the appointment–which I’d scheduled with the reason of having tonsil trouble and needing to recheck my immune system function–they asked me, “and you’re beginning IVIG?” I said, “…No? No one has ever offered me that!” and she said, “Hmm, that’s weird! Someone wrote down that you were starting it!” Hmmm…

I’d almost canceled my appointment before ever going to see him (“Other Doctor”), because between making the appointment while in severe pain and the days before the appointment actually arrived, my herbal rinse helped my tonsil to the point of there being no spots left. “Luckily” I didn’t cancel. (By the time I arrived, he actually said it was fine!)

Long story short, my current doctor, the “Other Doctor,” who shall henceforth be referred to as My Immunologist, is wonderful. He doesn’t know fully what myalgic encephalomyelitis (M.E.) is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgeable that once you get certain infections there’s a possibility of them going chronic, so we didn’t have to argue over that. And for some reason, in his chart as well, was written that I was there to start IVIG! I told him the same thing I told the receptionist, that I’d never mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s only a certain supply of IVIG, it’s extremely expensive, and they don’t just give it to anyone.) And so, staring at my page-long medical history, and at a loss of how to help me, he offered it to me!

Thus, because of this tonsil and the other dozen quirky things that got me to that appointment at that time with that doctor, I have now gone through the system and gotten approved for immunoglobulin replacement therapy with the help of test results showing that my immune system is still.. well, my immune system, and both doesn’t have enough of things or produce adequate antibodies, and am starting my first infusion tomorrow, Monday, October 6th, at 9am at an infusion center. 

This will do either one of two things: Help me, or affirmatively rule out that this is never going to be one of my options so I can finally lay it to rest. But I’m obviously banking on it helping!

Of course, my tonsil has done what it’s been doing for literally months now, and the spots have returned and even popped up on both sides of my mouth. We’ve at least ruled out strep, though. He immediately called me in an appointment to the local office to do a culture with his associate, the lady doctor, upon hearing the spots abruptly came back over the weekend after the appointment, and spread. Neither one of them is sure why this is suddenly happening, but she thinks those and my other lymph node pains have been the result of an overburdened lymphatic system and weakened immune system, because nothing else has changed besides my relapse back in June. Basically my body is probably just overwhelmed. I liken it to a skin infection I get on my neck only when my immune system is overwhelmed. This could lead to tonsil stones if it doesn’t clear up, but he’s hoping the IVIG will help that, too (and at least this helped document my need to the insurance companies). Frankly, since the severe pain has subsided, I’m content to let it work itself out, now.

My favourite part about this, besides the actual IVIG, is that I get fluids after each all-day infusion because of my chronic dehydration and MTHFR polymorphisms, the latter of which make me extra susceptible to blood clots. So I get to do this once a month. Which means I get fluids once a month.

I hadn’t written about it here yet, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June and that did help a lot–now I can usually “save myself” when things get close to an emergency–but it’s still a daily battle. So if the IVIG goes well, I can continue getting monthly fluids as well, and dehydration will be one less thing on my balancing plate.

Another thing my bloodwork revealed was a high eosinophil count, which for me means the bartonella and/or mycoplasma are active–no kidding!–as that was one of their first presentations. They’re not as high as they were before when things were progressing really quickly, though, so that’s comforting–maybe this IVIG can help subdue them!? I’m very eager to see what will happen when I can actually make antibodies! :D

I’ve joined the Immunodeficiency Foundation, so if you’re on there, look out for me, or let me know your username. My thoughts about primary immunodeficiency usually take the back-burner in comparison to everything else I must balance, but when I think about it, living with it really does add a layer to my life that people with full-functioning immune systems just don’t have to worry about. I’m looking forward to being part of the support community.


As of this month, it’s now been two years since the big relapse (before this one) that made me stop all treatment in favor of, um, living… Now I get to try this! I’m thinking surely it will do something, for all of these factors to have led me to this point? I don’t believe in coincidence! I’ve been visited by multiple types of owls in my backyard almost every night since this whole tonsil thing started, despite maybe only hearing a wild owl three times in my entire life before this. Owls are symbolic of intuition, wisdom, the ability to see what others do not, and their presence announces a symbolic death, major life transition and upcoming change. 

Last night the Great Horned Owl visited me again.

a rainbow at night

A Relapse Within a Relapse

Avenue of the Giants, Humboldt Redwoods State Park © a rainbow at night

First, I can’t thank anyone enough for the response on my last post; it was quite unexpected. I’m glad to have touched the hearts of so many and to have received such a beautiful outpouring of love and support in the comments and e-mails that followed. It really helped me feel less alone, and you should all stop to think of how amazing you are for reaching out to a practical stranger. Thank you.

Right now the biggest thing on my mind is, a friend of mine who I wrote about several months ago, Brooke, is in the very final stages of myalgic encephalomyelitis. There were recently several weeks when insurance troubles denied her hospice care, during which she deteriorated very quickly. I do know she is getting at least some pain relief, and that is a blessing, and recent complications hint that it might not be too long…which is probably a blessing, too, if you ask me. She worked extremely hard to produce this post and a subsequent one to cover any confusion about her decision to deny “life saving” measures (questionable terminology) such as feeding tubes, which would only work to extend her suffering past her natural end. Her family will be delivering any updates as they occur.

[ETA: As of writing this, she’s managed to produce one more post clarifying that her amazing doctor convinced hospice to accept her for another 60 days. And amazingly, her bravery has led to being a part of an upcoming documentary about the severity of true myalgic encephalomyelitis, one that might chronicle her passing from this world in an effort that will accomplish her original goal of Documenting M.E. and all that it entails, to help spread the truth for us all.]


Also, I’m in the midst of a further relapse. My health has been in a state of decline since June, and additional stressor after additional stressor pushed my body over the edge. Or at least that’s what I assume happened, because I can’t pinpoint one particular thing that did it. I do know the emotionally draining act of writing a goodbye letter to my friend–because life happens–sent me into incapacitating illness for a straight week, during which I was struggling to remain conscious every single day. It was quite scary, but I’ve since become able to stay awake more easily…

It actually took me a while to realize I had relapsed. When I first felt the decline, I expected to recover in a few days, as my health is highly sporadic and changes every day, every hour, every ten minutes some days… And I even expected this recovery might be more extended because of the seemingly continuous stream of triggers… But while I was knocked out last week, it occurred to me that my waiting to improve back to my previous levels of energy had spanned about 8-9 weeks already.

I may write further posts on this and other topics, soon, but right now it’s easier for me to do other things that only require small periods of focus. I’m updating my website behind the scenes, mostly.

Please continue to send your prayers, metta, and positive thoughts to our dear Brooke, her husband, and the rest of her friends and family. Also, to everyone who has recently subscribed here, thank you, and rest assured I will continue to write. (The Life Lessons section has a collection of my favourite posts, in the mean time.) My girlfriend might even be helping write a few sections and/or articles. If you want to contribute either with writing or links that you’ve found particularly helpful, don’t be shy about getting in touch! This site is for my expression, but the information I stand behind should be for the benefit of all.

I shall be focused on finding stability in this relapse.

a rainbow at night

A Dose of Reality: Flare-ups, Symptoms, and Emergency Rooms

First off, a huge thank you to those who have expressed their support and gratitude of my recent writing… I was not expecting it. I have read your words and I want to reply as soon as I can. Right now I feel an update of sorts is in order. Forgive me while I use my spoons for expression, but know that I am actively awaiting the right words to respond to the support you have offered in my direction. :) You help me feel less alone, and on weekends like this one, I really need that…

At the beginning of May I wanted a mini-celebration of the fact that I’ve been off treatment six months and I am still walking okay. So what better a way to affirm my functioning feet than with new shoes!

K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30
K9 by Rocket Dog® Odetta Floral-Print Ankle-Strap Pumps, $30

This event was right before my monthly Lyme disease flare, which still happens around the beginning of the month. I forgot about it this time, so it wasn’t until day three of being in bed that I realized why all these symptoms were suddenly happening.

I effectively went from walking “normally” in new shoes, eating at my favourite foodie joint, to being in bed four days, excessively sleeping through over half of it, and having seizure-like activity again.

Yesterday, I felt as if every inch of me was buzzing, vibrating from the inside-out. I also tried to wash my face with sunscreen; use toilet paper as moisturizer; pour my milk into a sauce bowl instead of a glass; made accidental purchases online; and found myself standing in places I didn’t have any memory of walking.

Yes, I remember all of these symptoms, unfortunately.

But still it helps to know why it’s happening. Not only that, but I’ve noticed I’m typically worse on weekends, again, i.e. every 5-7 days…an ominous sign from my bartonella era, but a fact nonetheless. Please, no.

 

My ego said, I would rather all this NOT occur immediately after I finish celebrating how relatively well I’m functioning after six months with no antibiotics! Why did you have to remind me, right now? Maybe I wanted to forget for a little while, just how much my body is going through, just how sick it is…

Another part of me is saddened at the reminder.

And another part of me is actually thankful for the reminder, because it won’t let me float away into denial, while at the same time hoping that I won’t sink into despair…at least not for too long.

See, I go through the same emotions as everyone else. I don’t ever want to seem like I don’t.


I’ve been relatively doing so-so. I never imagined stopping treatment would have given me so much of my life back, these months that I would have otherwise spent in misery with no real benefit except more worsening. Instead, I have more good days right now, I’m determined to use them fully, and I can be mostly comfortable.

Symptom-wise, this has developed:

  • I consistently see the squiggles, black dots, and smoke-fog illusions in my vision.
  • My hands go numb more often, and various irritated nerves cause intermittent curling of my fingers.
  • There is more numbness in my feet, and more of the old “fire foot” sensation.
  • I have more heart palpitations and trouble staying hydrated.
  • My left leg buckles more frequently.
  • I get more spasms in my back.
  • I get choked more easily.

I recently returned from two ER visits with a random virus…and just like after my last viral attack in December/January, my vasculitis is temporarily on hiatus. So for now I’ve been able to stop the daily ibuprofen that helps keep it in check, but which has also resulted in more trigeminal neuralgia episodes and eye pain.


The shot in my neck they gave me to attempt treating the occipital neuralgia did not go as intended, giving me very odd side effects like falling backwards and an inability to recognize myself in the mirror (?!), I suspect because of the brain lesion(s?). Even just sitting down in my wheelchair, I was so spaced out and off balance that everyone in the office thought they’d given me a sedative–nope! On the plus side, it did seem to interrupt the constant barrage of pain signals coming from the area, so it’s not as constant as it once was. Being on only half the pain medication that I was on before, unmasked many of the neuropathy symptoms that up until then I didn’t know were developing; another thing I wasn’t expecting.


My favourite bit of news is that, I found out if I cover myself in sunscreen before being exposed to sunlight, the vasculitis doesn’t flare up. :) Annnnnnd as of my most recent echocardiogram, my heart function hasn’t worsened, so they don’t want to see me for another 18 months!

a rainbow at night

 

What My Pain is Actually Like

It occurred to me one day several months ago that I’ve never stopped to answer a question people may have, the same question I often wonder about others in my situation: When I talk about being in pain, what am I actually talking about?

In my case I’m talking about severe head pain, and what some call “malaise,” but… Malaise is what you call it when you are sick and you feel “off,” and unwell, and basically.. gross. It’s also a term you can use for having something as simple as a cold or as insufferable as end-stage AIDS, much like a fever has drastically varying levels of severity.

In “malaise” standards, what I feel is like my immune system is fighting to save my life but it may or may not actually take me down with it. Most types of pain are usually localized, or at least, if it’s everywhere it’s an identifiable ache. This? Maybe I should invent a new term.

Deathlymalaise. Yeah that sounds about right.

What happens in my newly coined “deathlymalaise” (feel free to use that), is this:

  1. I always have “the” headache with it, the one I’ll discuss in a moment.
  2. I have a low-grade fever, and I alternate rapidly–or maybe there is only the sensation of rapid cycling–between uncomfortably warm and sweaty, and clammy, cold, with freezing and numb extremities. It’s like when you have the flu and every five minutes you’re either tossing the blankets across the room or clambering to collect anything made of fabric and burrito yourself in it. My GP says this is my immune system. Apparently it’s trying to figure out what to do with itself.
  3. I feel dizzy and there is often a “buzzing” sensation, but whether it’s nerves sending wrong signals or my vascular system trying to sustain normal circulation, is anyone’s guess.
  4. My lymph nodes, particularly the axillary and cervical nodes (under your arms, and around your neck), have a constant, dull ache, and get stabbing sensations.
  5. I get muscle spasms in my neck, back, and all around my abdomen in general, that are so sudden and severe I usually end up screaming.
  6. I feel a burning sensation in the nerves in my face, as if they were on fire from the inside-out. I think it comes from the same inflammation responsible for my headache. The trigeminal neuralgia is thus usually activated and I have to stop myself from clawing at my face–that wouldn’t help much, now would it?
  7. I feel as if I’m going to vomit, but I won’t let that happen–I take Zofran as necessary.
  8. My joints–moreso on my left–swell and get stiff, difficult to bend or move.
  9. There is substantial fatigue during these “bursts” of deathlymalaise, but sitting or–more appropriately–lying in one place is usually not an option because this is the kind of suffering that, on the pain scale, would be at the level that it interferes with your every thought.

I’m a complete and utter wreck. And please remember, this list is only covering the malaise part of the illness, something that has been very prominent since The Big Relapse. It’s not medication withdrawal, because these symptoms are part of the reason I started taking anything to begin with, and it’s not herxing. It’s just disease. It makes me uncomfortable to even type that, but it is what it is. I can’t sugarcoat something like this.

[ETA, 2016 Feb] In Dr. Hyde’s book about Myalgic Encephalomyelitis (which back then in 1992 he abbreviated as “M.E./CFS”), he describes our malaise like this, under “Pain Syndromes Associated with [M.E.]”:

” ‘Malaise has probably occurred in every [ME epidemic] described in the literature.’ Malaise is accentuated in the Initial Stage and it recurs for as long as the disease process exists. Malaise is almost impossible to describe. It is often referred to as the pain and discomfort that one has during the acute phase of an influenza. However, it is not always the same. The patient feels terrible, feels as though he is about to die.

“It particularly injures the sensory and dulls the cognitive abilities of the brain. The pain seems to originate everywhere, both on and within the chest and abdominal areas, head and extremities. The rapid muscle and brain fatigue that is normal in [M.E.] becomes accentuated.”

As you can see, what I described when I first posted this in 2013 is almost exactly what Dr. Hyde wrote; I was absolutely floored when I read it, and honestly, most of the book is like this: full of specific, uncanny validation about all the quirky things that occur in this disease. If you have M.E. I highly suggest you buy it while it’s still available.

Some of the other things I wrote are very specific of Lyme disease, such as the burning in my face where the infection damaged multiple nerves, and the “buzzing” sensation, which many Lymies describe as, it’s like you’re sitting atop the hood of a car while it’s running. [/ETA]

I usually feel aghast–but almost in awe–at the reality that a person could possibly feel so horrendous, and helpless at the thought that a hospital–the place you’re raised thinking can always help you during any health crisis–cannot do anything, because there is nothing to stop what’s happening. How do you explain to someone how terrible all that feels, with the word “malaise”?

Several of my friends who also live with Lyme & Company admit to feeling this, some even writing letters or notes to loved ones during the worst “episodes” because they think surely something must be about to go very, very wrong for the human body to give out all these warning signals.

They usually say, “I feel like I’m dying.”

We really do.


The progression of my headaches has been a monster all its own. Their onset began with occipital neuralgia four months after my tick bite, almost seven years ago. Bartonella came with its own, mostly frontal-oriented headaches; I don’t have those any more. But almost without fail, I have had a particularly severe headache for 4-5 consecutive days every four weeks since the Lyme invaded my nervous system. Now, that exacerbation happens about every two weeks, thanks to the Mycoplasma (or at least, I assume).

I used to requite prescription-strength medications for breakthrough pain only a few times a year for the attacks of occipital neuralgia. As things steadily progressed (especially within the past two years), I went from needing them an average of 1-3 days per month, to having 3-week-long bouts of unrelenting head pain which alternated with 3-pain-free weeks, seemingly for no reason. Now, since my relapse in October, I’ve needed them every single day except 1-3 days per month. I guess all of this is why needing them so much frightened me: I wondered–and still wonder–if there is no turning back from this point. Regardless…

This head pain is a throbbing sensation at the back of my head, the base of my skull and down into my neck. I wouldn’t outright call it occipital neuralgia, because my attacks of O.N. are even more severe and almost completely untreatable. But otherwise, it’s just like them. Baby neuralgias? They even exhibit the so-called “ram’s horn pattern,” and the top of my head often goes numb, and I am sensitive to anything touching my scalp. There is no sensitivity to sound, but extreme sensitivity to light. I get bursts of nausea. Since vasculitis has been such a major feature of this relapse, these “headaches” may have some vascular component.

As of right now, later this month my pain management doctor wants to try a shot in my neck. I’m uncertain is he intends a nerve block for O.N. or another route, but since this has gone on so long, it’s time to try something new.

 

There’s not really a pretty way to close this article. But when I talk about being in pain, to all of this is what I refer.

a rainbow at night

Viruses, more ER visits, and the MTHFR test

I’ve wanted to make some posts, but a few things have set me back. The holidays, unexpected family visitations, and a virus.

Usually I’d go into extensive detail of dates and symptom progression, because the nature of my “viral” infections are questionable as to whether it was an acquired seasonal bug, or a flare-up of something I already have. This was definitely something I caught.

It started with a “feels like I’ve swallowed glass” sore throat and proceeded to cause symptoms of every seasonal fluke known to man…except a cough, THANK GOD! The whole ordeal lasted nine days, if I remember correctly. The first four, my body was trying to figure out what was happening. Aside from feeling especially like hell with glass-throat, I couldn’t tell anything apart from my regular symptoms. And then it abruptly realized I had a bug and went into “attack it!” mode, which sent me to the ER the first time, with rapid-onset fever and of course, dehydration.

The second ER visit was due to intractable head pain. Let’s put it this way: I usually take my pain meds twice a day? I was taking them every four hours, they were only barely working, and I had to set an alarm to wake me up while sleeping to take them or I’d wake up sobbing. It turned out that all the.. I’ll say trauma, of the added stress triggered my occipital neuralgia. Once I figured that out, I was able to treat it, which is to say, use the combination of meds and heat I know to be effective in calming the storm until it passed.

I always say I’d rather have a full-blown migraine for a week than an attack of occipital neuralgia for even one day. They gave me hydromorphone. Twice. (I’ve said to “normals” that they gave me morphine, because everyone know what that is, but they actually gave me Dilaudid, which is about three times stronger than morphine.)

A funny thing happened as I recovered from this. My immune system apparently got distracted from attacking me, and I had much-reduced pain and no vasculitis for about a week. Then it remembered who I was again, but I enjoyed those “days off” from everything!

I haven’t been on ANY of my vitamins or supplements since it started, but another funny thing: I can’t tell any difference. This is a complete 180 from when I was in treatment and I could tell which supplement I forgot by which symptom popped up within the next two days–arrhythmia if I’d forgotten my calcium, a migraine if it was my magnesium, chest pain if Co Q-10. Randomly, but perhaps importantly, I’m REALLY REALLY glad I was taking high-dose Vitamin C in the month prior to that virus finding me! That might be why it took four days to really settle in. (Vitamin C doesn’t help much if you’re healthy, but if you’re immunocompromised it can make a big difference.)

My best guess is that, my body doesn’t need as much help since I am not in treatment? I’d like to think it’s a good thing that I can now survive without supplementation, and I’m not planning on going back on everything unless necessary. I know I need magnesium to preserve my nerve function. And the Co Q-10 for the M.E.; I’ve been having chest pains galore from all the activity sans supplementation to help my muscles recover. And possibly my B-complex, also for nerves, but I’m going to hold off on that until I get the results of this new test I’m having to see if I have the MTHFR gene mutation. (Yes I am aware of what that looks like an abbreviation for, and yes, I laughed.) It can prevent the body from detoxing properly and also cause hyperhomocysteinemia (can we just call that hyperhomo? that’s funny, too) which can result in vascular problems and strange reactions to B vitamins… I have all of that! But of course I have symptoms of everything, so I can’t get TOO excited. It’s a gene mutation genetic polymorphism so it can’t be cured, but it can be managed if we know I have it.

Since I don’t know the rate at which I’ll be posting, I’ll just give you a preview. I’m going to talk about my New Year’s resolutions, how taking a one-month break from Twitter affected me, and how Christianity never helped me deal with the reality of chronic illness. Eventually I will also describe what my pain is actually like, because chronic pain means different things to different people, and I’d like to talk about my version.

See you soon!

a rainbow at night

Pill Fatigue or Pill Failure?

It feels like I’m talking about someone else’s life, sometimes, when I go to write about this.

So, in my last post, I said I’d give myself another two weeks off treatment and then re-evaluate my state of health to see whether or not I should restart treatment for Lyme disease. Something happened to help me make that decision.

I got an ear infection. Just a minor bacterial one which I get about once a year if I’m not already on antibiotics at the time. (Well, at least compared to a VIRAL ear infection, they’re minor.) I’m a miniature pharmacy so I already had the Z-pack needed to treat it.

I took one pill (and you’re supposed to take two at first, but I didn’t think that’d be smart for me…I was right) and spent that night feeling unimaginably ill while trying not to have a mental breakdown.

Fellow Lymies already know this, but: Zithro is the cousin of the medication I’ve been on (Biaxin) to treat Lyme disease, and also a potent treatment option in itself, so taking it affected a lot more than just trying to help my ear. There was fever, chills, constant shaking, dizziness, numbness, nausea, and a host of other things, like not being able to remember my best friend’s name (?!?!). But the real “kicker” was that I felt that way from just one pill

After being off meds for a month and a half, I can’t even handle one pill. :|

I can only handle half-a-pill, which is less than a child’s dose, and I can only hope it will be enough to cure my ear infection… But it’s definitely not enough to treat my disease. If anything, these tiny half-doses may keep things from progressing too quickly, but will also make me a target for drug-resistant bacteria, and then talk about being in a mess…!

This does take away the choice (mostly) of whether to begin treatment again or not, because it’s obvious I physically cannot do it, and mentally, I am still so, so tired.

Toward the middle of November, I thought I was doing better. I left the house three times in a week, and (not the same days, but) I had three consecutive days with no pain. So I thought I was getting over the relapse, until this happened. I was just a little crushed… But it is what it is, right?

I’m not sure what’s going to happen from here. My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. (And the Lyme disease is stage 3, meaning it’s.. everywhere. And it does not wait for you to be able to handle antibiotics.) But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.

If not, well… C’est la vie, que sera sera, and all that jazz.

 

I stopped doing the ability scale checkpoints because they are a reminder of how I haven’t made much progress since finishing bartonella treatment. Now, I don’t want to make that sound mediocre… If that disease was still present, I wouldn’t even have the luxury of wondering whether or not handling treatment was an option; I’d just be dying very quickly again!

But the truth is still that I kept waiting for a stable period to make an assessment, and that has yet to happen. I repeatedly had to pause treatment, take such-and-such different medication, take this-and-that medication to balance out the first one, then relapse, recovery, relapse again, and whatever progress I did make, I just kept going downhill again.

I made my last checkpoint at the beginning of this year and I can honestly say I am still at that place, in general, with the obvious adjustment that my symptoms are more severe for the time being due to relapse. But at least I am not any worse than that. I like being able to breathe and walk on most my days. And I do think I am a bit recovered from this relapse that began at the beginning of October.

I can handle longer periods of light, I can be out of bed more, and I have longer stretches with less pain. The translation of that is: I can usually use technology for several hours a day instead of bursts of twenty-minutes until I couldn’t bear it anymore; I make it out of my room several times a day instead of barely once, and sometimes I can leave the house; and my “usual” needed dose of pain medication is once a day, instead of always twice a day…and I have random days where I don’t need any at all. So,

  1. without intervention of medicines like caffeine (which is the only thing that enables me to do things like take a bath, or have a stable blood pressure), or pain medications (which are the only reason I can be active at all); and
  2. with 100% being completely recovered,

I am currently at 15% physical ability and 20% cognitive ability. As we all know, there are better days and worse days, but in general…

And with 100% meaning completely symptom-free, I am at 10% symptom severity. Though I think the chart should be in reverse for that section, because initially “10% symptom severity” sounds as if I only have symptoms 10% of the time, and it’s the exact opposite I contacted Jodi about this and she switched the chart around, so with the new version, I’m at 8/10 severity level:

“Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.”

Thankfully I do have medications to help me get through this difficult time, and all the support in the world from my friends, fellow spoonies, and doctors, about whatever decision I have to make. (My family unfortunately has no idea of the magnitude of this… Right now, I’m not sure I’d want them to know, until I can give them an idea of what we’re looking at…) And I have an appointment with a pain management specialist next week, and I see my Lyme disease specialist on the twelfth. So this is where I am at!

a rainbow at night

(P.S. – Today is my 2-year WordPress Anniversary!! I never imagined so many people would be helped by the words I share. Thank you, all. Stay strong with me!!)

For right now, this needs to stop.

As far as my relapse conundrum, I could not continue treatment, after all. I just.. stopped. I am still so emotionally drained, and my body is at wits’ end. I’ve been off antibiotics for a month, now, and I’m flaring at the moment because of the usual beginning-of-the-month bug-flare that happens… Only this time I am not protected, so it’s scary to think of what they’re doing in there! How can one feel this close to having the flu and not actually have influenza?

On Samhain I ultimately decided to take another two weeks off and just restore my body as much as I can, with only the necessary things and as few medications as possible. I don’t think I have any yeast problems from the long-term antibiotics, but I’m going to take a few doses of candidiasis treatment, just in case. And then I’ll talk to my LLMD and see where we can go from here.

I can’t thank you all enough for the responses to my last post. At any given moment, I am ready to reach out for help, or curl into a ball and never speak again. It’s a constant back and forth. I want to say, “the disease is what makes me want to retreat,” but it’s not even that. It’s my response to it. It’s knowing that I do have some control here, I do have a choice, and I’m terrified of making the wrong decision. Continue this grueling treatment regimen and make myself worse, an inevitable decline, or forego treatment completely and still begin an inevitable decline. But I’ll tell you what.

My intuition says to stop.

And I always, always listen to it. It says I need this break. It says I could use it to heal my body as much as I can, and in two weeks I may know clearly again what next step to take. I can’t believe in God as much as I do, and ask Him to guide me, and then not follow what I feel is the right course of action, even though I can’t explain it.

That became even more apparent today when I really wanted to take my antibiotics again, because the thought that these infections are inside me running amuck and I have nothing to stop them, is very frightening. It was then that I noticed how strong my conviction was to not resume my treatment…

Anyone think I’m crazy, yet?

I can’t help but notice that the idea of treatment helping me, which has always been my motivator in the past, has not even crossed my mind. It’s as if somewhere inside I know that to continue with it at this point in time would do me harm. Logically speaking, I think that not treating is also pretty bad, but somehow, not as bad as taking these medications; at least not right now.

So that’s where I’m at.


I also had a visit with my new neurologist, and it wasn’t as productive as I thought it’d be. Part of that is my body’s fault because I only got to ask him half of what I wanted–I was so bad-off that morning I almost passed out in their waiting room.

In response to my relapse he said, “There will be good weeks and bad weeks, good months and bad months.” And apparently when you tell someone you have myalgic encephalomyelitis they don’t think twice about you having severe daily headaches and eye pain (i.e., “I guess you do have headaches”). But he’s a good doctor who at least didn’t outright call me a hypochondriac. I’ve noticed with having this lesion on my brain, people tend not to think you’re “just exaggerating” quite as much. He said it was post-infectious demyelination, but it wasn’t changing in size so he didn’t feel I needed a repeat MRI for right now. My various damaged nerves are healing up, so that’s a good thing! So much so, that he didn’t  think I ever had facial palsy…! Luckily that’s in my notes from my last neurologist. :\

He also thinks all my movement disorder problems are Tourette’s… Which is wildly inaccurate, but because he thinks Tourette’s Syndrome is just a “group” of movement disorders rather than its own thing, and that it should be diagnosed only after the other movement disorders have been ruled out, it would make sense for him to say that. I can always see that movement disorder specialist should things progress even further, so. (I know it’s not Tourette’s because, while my TS does act up when I get new infections, it acts up completely differently than the problems I’m currently having.)

He said do NOT take any triptans for my migraines (the main reason I went to see him, actually), and gave me Cambia powder to try for my next attack. Which my insurance won’t cover, of course, so I’ll rely on samples, like the other three medications I can’t afford. He diagnosed me with complicated migraine and said I really should be on a preventative medication with this type of diagnosis, but I mentioned that not ALL my migraines do the whole “Hey I Look Like I’m Having A Stroke” thing. I’ve had them fifteen years (or at least that’s when I was finally diagnosed), so it makes sense they’d eventually progress, but I only get “those” maybe once a month or every two months…which is probably not very good, but good lord I just can’t handle another medication right now, especially when my options for preventative medications are very limited! I think he actually ran out of ideas for me since Topamax is practically my only choice and it lowers my intracranial pressure. :\ But at least Migraine is a well-studied disease and, should I live long enough, they will probably come out with something new, soon.


The best news I have is: (1) I got to visit a friend (actually, I returned to the scene of the crime of where I caught Lyme disease), and I recovered pretty easily from it with all the careful planning and tailored resting schedules. And (2) I invested in a tilting overbed table. I don’t think I have words to describe how useful it is. How have I never thought of this before? Person who is in bed most of the time, desks that go over the bed… Regardless, this thing is amazing. What I really love is the little mini-desk on the side that always stays flat so you can put stuff on it!

a rainbow at night

Relapse Journey: Is Choosing Treatment Still Choosing Life?

Here, let me type this so you all won’t think I live in a happy-land bubble. (That’s not really why I’m typing this, but it’ll probably confirm it unintentionally.)

This relapse has sent me on quite a ride, physically and emotionally. I did need to take the full two weeks off of treatment, and I’ve only been back on treatment one week before hitting the point of “why am I doing this,” because I’m still relapsed, feel like hell, and I can’t handle this. I’m generally better than I was during the initial crash, but I haven’t bounced back from that point, yet. And the pain…

I have been on twice my usual pain medications, every day, for almost the entire past three weeks. I think there was maybe one day I was okay without anything (and I really wish I knew how it happened!). This has mostly resulted in me subjecting myself to psychological torment over needing them. I used to be able to take breaks from ibuprofen, for the well-being of my stomach; now I cannot. I used to be able to take Lortab (vicodin, as most people know it) once or twice a week to get through the worst of things; now the pain is so bad I cannot function without taking it daily.

Even typing that–that I can’t function without painkillers right now–makes me feel guilty!

In my head, all I hear are family members who took them, who REALLY DIDN’T need them and therefore think no one else actually does, either; other spoonies who have said incomprehensible things like “this suffering is unbearable but I ‘don’t believe in’ taking pain medication”; and society saying that anyone who takes Vicodin is probably one step away from being House, MD during one of the really bad rehab episodes. So yes, cue the shame over needing something to make it through the day, when I previously could just tough it out.

I’ve done a lot of thinking about this, dissecting it from various angles… It’s like I feel I am somehow responsible for needing it, as if I did something to make this happen instead of realizing my body is severely ill. Well…

My favourite quote is the African proverb,

“When there is no enemy within, the enemies outside cannot hurt you.”

Which translates to: Someone’s ill-conceived judgement of you is not going to hurt you unless you actually believe what they say to be true. I even wrote it on my mirror in dry erase marker a few months ago, to remind me of it. This helped me realize that it wasn’t what I thought everyone else was thinking that bothered me–it was actually what I was thinking about myself. I was the one condemning me, not anyone else.

The people who love me were actually very glad I had adequate pain relief! It was (is) the only way they’ve gotten to see or hear from me at all the past three weeks!

It all boils down to a loss of control, I think.

  • Maybe I’m just not ready to accept that I’m still under the effects of this relapse and haven’t bounced back from it yet.

  • Maybe I’m scared my disease is worsening or my Lyme treatment isn’t working or has done all that it can do.

  • Maybe I’m uneasy because I’ve never been dependent on a controlled substance before.

  • Maybe I’m not ready to accept that I’m a chronic pain patient again.

  • Maybe it reminds me that things WILL eventually get worse.

  • Maybe I’m scared that there is no turning back from this point (even though there probably is).

These are the ways relapsing makes you feel. I’m frustrated over my Lyme treatment, and all these medicines, and I’m just.. so tired of all this. I’m so tired of this fight to prolong my life.

Sometimes I just want to stop taking everything and see how far I make it. But I also feel that’d be almost the same as suicide.

I just think, Well, if I’m going to keep going downhill, at least let me not fight/make it happen even quicker; it’d be better to enjoy what I still have than waste what’s left on a battle I can’t win. My doctor once told me that, even. If the treatment is as bad as the disease itself, to weigh my options. Treatment for chronic Lyme disease is like chemotherapy for cancer; don’t let anyone tell you differently. And even if you get relatively symptom-free, it can always come back. My old bartonella infection could always come back, even.

So for now, I’m returning to once-a-day Biaxin for the Lyme disease and Mycoplasma treatment. It’s either I go back to that, or I stop treatment completely. I’m emotionally worn out from getting better and then relapsing, with each event being worse than the one before it. (Quite a predicament to be in when my subset of myalgic encephalomyelitis is relapse-remitting–that’s pretty much all that my future holds!)


This might all seem like a 180 from my last post, but it’s not. Maybe I had to express how grateful I am to be alive, so I wouldn’t think this (what I’m feeling) was because I wasn’t… Because I am grateful, and all of this isn’t because I’m not.

My being thankful to be alive and also tired of fighting are not mutually exclusive.

I am so happy to still be here, to have all these things that help me, and people who love me… And sometimes, I just want that to be enough. Sometimes, I just want to embrace my accommodations, enjoy what I have, what life I have left, and live out the rest of my days in as much peace as possible, without the fighting to stay alive part every day, without the medications that are keeping one disease from progressing but which may be setting me up for worser things in the future.

The choice is ultimately mine, I know.

I don’t often say this, and it might be a bit crude, but I should get an award for not offing myself yet. I have friends with this disease who have tried, and friends who have succeeded, and I don’t blame them at all. No, I don’t blame them at all, in the face of a disease that takes you oh-so-slowly. To hold on when there is little hope of a cure, and you know what you’ll face later on: that is a true survivor, no matter what the disease does to you.

Well, actually, I did get an award; a blog award, and I’ll talk about that… In my next post. Along with some facts about the me, the person behind the blog.


For others going through a relapse right now, I offer you this:

What is a relapse?
It is an unexpected deterioration in the condition of a sick person after partial recovery.

Conclusion: A little Allegory
Imagine, if you can, a tranquil English breakfast table. The kettle steams, the electric toaster is in action, but someone forgets to adjust the thermostat. Suddenly the smoke alarm shrills from above and is wrenched from its socket before upsetting the neighbours.

Despite our wonderful self-regulating kitchen gadgetry, all is in chaos! In future, pay careful attention to your body’s thermostat, your daily variation in energy and activity and remain grateful for the commotion set up by your immunological stress alarm if it prevents another set-back. Good luck!

http://www.tymestrust.org/pdfs/nosmoke.pdf

a rainbow at night

Attention: I’m not suicidal.

My First Real Post in Months: “Something” Has Happened

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

Trigeminal Neuralgia: A Consequence of Lyme Disease

…Or bartonella. Or mycoplasma. Or similar infections that are commonly found in the same tick that carries Lyme disease. Unless you’re like me and you happen to get them from other sources like fleas, because you’re immunocompromised and collect infections like some people collect stamps.

I’m not sure which is the true culprit. I know I started getting occipital neuralgia about four months after my tick bite, so that is definitely Lyme disease-related, but I haven’t had an attack of that in a long time; I think it’s been a year?

My serious cranial nerve involvement began when I got Bell’s Palsy immediately after contracting mycoplasma pneumoniae, an infection that usually causes “walking pneumonia” but has been known since the 1970s to also wreak havoc elsewhere, like the nervous system. It can cause just about everything that Lyme disease can, and persist even after treatment by mimicking the body’s own cells. My right eye twitched and my face drooped. I’ve mostly recovered, but some of the damage is permanent. Then my left eye began twitching and it got damaged. That is also permanent. It was all downhill from there as far as nerve damage goes, but I’m here to talk about the ones in my face.

I began treating with Rifampin and Doxycycline in January 2011, and all hell broke loose: That’s when the autonomic neuropathy made itself apparent, culminating in its diagnosis a few months later. I can’t coordinate how it all fits together, but I know my vagus nerve became damaged, my trigeminal nerve got involved somewhere, the Bell’s palsy is a factor (i.e., damage to the seventh cranial nerve, literally called “the facial nerve”), and my migraines are connected.

When the autonomic mayhem landed me in the hospital, I would try to eat something, get an “episode” where my vagus nerve would trigger all sorts of things it wasn’t supposed to, and I’d get a migraine. I got so many migraines I had to be on Topamax for almost a year. Now these days, instead of my nervous system having a meltdown, I’ll sometimes get facial pain when I start digesting, again triggering migraine-like pain on the right side of my face until the digestion stops. This can happen even if I haven’t eaten, but the act of eating can apparently be a huge trigger for trigeminal neuralgia; more on that horror story, below. But how did they all end up triggering each other?

  • The trigeminal nerve is implemented in migraines and facial pain.
  • The facial nerve can also be implemented in facial pain (ha, no kidding!), and the tongue numbness I get.
  • Episodes of trigeminal neuralgia can involve the trigeminal nerve and the facial nerve simultaneously.
  • And the vagus nerve–as it pertains to this post–is responsible for digestion-related reflexes…

But again, how did it come to be that my vagal reflexes got connected to my trigeminal response, in ways they previously were not? All I know for sure is one or more of these infections attacked my cranial nerves, and I’m left with odd, painful remnants as my body has attempted to heal.

 

After my last post, the “tension-headache-thing-that-wasn’t-quite-a-tension-headache”-thing went away and was replaced with the worst episode of trigeminal neuralgia I’ve had to date. Perhaps the tension-like pain was a precursor? (A Lymie friend on Twitter mentioned that she often gets headaches or migraines before her trigeminal neuralgia attacks, too.)

The best way I can think to describe what happened is that, I ate a bowl of crunchy cereal, and immediately after it felt like my teeth were going to explode. It’s one of those things where, if someone else told me the level of pain they were in, I would swear they were exaggerating because how is that possible? My other attacks have been similar–extremely severe, extremely sudden pain that makes you start shaking from its intensity–but it’s never lasted quite this long.

I remember a long time ago writing about another unusual headache, something that acted like “an ice pick headache that keeps on going.” In hindsight, that headache that felt like someone stabbed me in the forehead may have been an episode of trigeminal neuralgia, too. :\ It certainly sounds like it, from what I wrote.

I hate how deceptive it can be, when it starts to fade away only to attack you suddenly again. It took several days to completely go away and stop fading in and out. I have moments of unexplained facial pain daily, anyway, but nothing so severe as that. For my usual, spontaneous facial pain–the kind that is often tied to my digestion for some unexplained reason–butalbital is a huge help. It’s a huge help in my neuropathic pain in general, actually, even though I’ve never heard of anyone else using it for that. Half a tablet of Fioricet (or Bucet, which is the same as Fioricet but without the caffeine; most doctors don’t even know it exists) and that kind of nerve pain is usually gone.

Like occipital neuralgia, nothing much helps trigeminal neuralgia, or at least nothing that my system can tolerate. (Things like carbamazepine are completely out of the question for me.) That night, I was already on hydrocodone and ibuprofen, but had to take twice as much as I usually need, and it still only dulled it enough so that I wasn’t shaking. I couldn’t lie down and put any pressure on my skull until it began to ease.

The gratitude I had for being able to take those pain relievers cannot be put into words. And I’m still trying to wrap my head around the fact that something can hurt that much, and that I went through it. If you’d have told me two years ago I’d be going through something that would make my face feel like I was being stabbed and my teeth as if they were going to explode out of my skull at any moment, I’d have called you crazy.

I feel so much for people who have to go through TN, especially if they have no idea what is causing it. At least I know what is causing mine.

If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate Medical Doctor or LLMD, you probably do–you can read this and call IGeneX to order a testing kit for your doctor. Igenex has an accuracy rate of 95% and tests for all possible reactive bands, unlike standard testing which only checks you for the most common thirteen and produces a staggering rate of false-negatives. Additionally, you may watch Under Our Skin, an excellent documentary film containing people with illnesses like Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Parkinson’s, and ALS, who found out Lyme disease was the cause of their symptoms; most recovered. (Not in the US or want more help? Click here.)

a rainbow at night

(Postscript: This is not related to TN, but with this month’s Lyme flare up, I had my old parkinsonism symptoms of slow movements and “freezing” while walking. It’s been a few months since I’ve had those, and they definitely caught me by surprise, especially with how slow my hands were functioning. Those of us with Lyme disease know how startling it can be when you’re doing (relatively) “okay” then suddenly your body thinks it has succumbed to Parkinson’s overnight! Luckily, as usual, it only lasted a few days and I am all right, now.)

Mycoplasma and Reflections on Having PANS/PANDAS

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

Relevant Links:

This is an entirely new way of formatting, but…

…it’s the only way for me to get this entry published. I’m basically forcing myself to update. I won’t be making a habit of this, but for now… Purple things about life, black things about health updates (read as: Purple for things that are semi-interesting, black for things that I need to write down lest I forget).

  • June 5th: I started reading American Gods. (So far I’ve made it to chapter four, I think.)
  • June 6th: I got my bloodwork back, showing that my liver enzymes are perfectly normal, back in their 20s and 30s, thanks to the Liver Chi my LLMD put me on! I’m enthralled. If anyone is having trouble with their liver enzymes, and milk thistle isn’t enough, try this stuff! I’ve been on 2 capsules 2-3 times a day, as per doctors orders.
  • June 8th: Spent the day listening to music and watching the rain. If you want to know what it sounded like (AND YOU DO), open and play this and this at the same time (adjusting their individual volumes as desired). Also, decided that one day I will own a professional camera.
  • June 9th: Shaking for most of the day with very visible tremors.
  • June 10th-11th: Muscle fatigue (via M.E.) due to a lot of arm usage in talking/typing to a bunch of amazing people. (It was worth it. ♥) Also very, very sore, with a “I feel like I’ve been run over” type of pain, reminiscent of my fibromyalgia days, but not as severe. I had ordered some very soft clothes that finally arrived, which really helps the burst of peripheral neuropathy I’ve gotten lately. I’m assuming my nerves are trying to heal from whenever these infections had spread to my arms several months back. Fioricet is a HUGE help for neuropathic pain!
  • June 11th: I realized that, over the past.. well, a long time, I can’t remember anymore, but I’ve developed oromandibular dystonia that’s mostly triggered by eating. I hope it is worsening now because of herxing, like my other forms of dystonia did when I began treating bartonella last year, and not because it’s something that’s going to hang around. I have quirks, yes, but it is mainly triggered by me trying to eat and chew, etc. Perhaps there is some kind of sensory trick I can learn to tame it? I have some information about when it may have started thanks to my wonderful tagging system, but I’ll have to sort through that, later.
  • June 12th: My niece made me an acronym poem, something awesome about me for each letter, and left it out for a surprise. Aha. I love being the aunt. ♥ Also, I needed my glasses this day. Most days I am fine and don’t need them indoors, but it was a “blurry-can’t-see-the-tv” day. Does anyone else get that? You just wake up with poor eyesight?
  • June 13th: I felt great, it being a Wednesday and the furthest day from my Thurs-Sun Flagyl pulse. And for the record “great” means being able to breathe when I stand up, and able to walk around. I did some minor cleaning, and even did some laundry!

Yesterday I had my cardiologist appointment. He agrees that the palpitations are probably from the Liver Chi, said to be careful with the ibuprofen since it is also processed by the liver, and to continue getting regular labwork to make sure things stay stable. If anything continues to flare, I should go see him again, but as of now I am good for another five months and I don’t need to repeat any heart function tests until next year. :) He’s sending me to get a urinalysis because I have nocturia that has been worse the past several months. During the day I think I urinate a normal amount, but during the night it gets worse, and we’re not sure why. I also told him about this cough that’s gotten worse the past several weeks, but I forgot what he said! Also, I had the beginnings/continuation of further eye problems, which I want to talk about, more.

My eyes continue to be a bother for me. As I mentioned previously, I’ve been staying in the dark since beginning treatment because it is too painful to be in normal light. Some random days I am okay (like the day it rained, and I was able ot have the window open!) but for the most part, it is me in my dark room with my dim lamp.

As for this recent “episode,” I assume it started on the 12th when I woke up and needed my glasses. Then yesterday, as I was lying on the exam table waiting for the doctor, every time I opened my eyes, the walls were a different colour. Yesteday night, the photophobia started. (I need to make a photophobia tag…) The light from my cellphone, on its lowest setting, was excrutiating. Today it was just as bad.

I have my one window covered completely with layered curtains, and thumbtacks around the edges to keep them completely shut–the only light that enters my room is through the top of them, and I even have a towel over that. Just the few flecks of light that managed to escape through the top of the towel this morning were enough to make me roll back under the blankets in pain. I eventually got up and threw two more towels on it. After several hours in the dark, some ibuprofen, and some coffee, I am much better, hence the typing. According to my tags I’ve had this exact set of symptoms in April of last year (cough included!), and it was when I was (1) on Zithro (read as: Biaxin’s cousin) and (2) having one of my “these are strange symptoms what is going on” phases. So I’m going to assume this is Lyme or Mycoplasma, and just be glad I am on antibiotics to kill both of these beasts. :\ At my next LLMD appointment I want to start A-MYCO from Byron White formulas, too.

…And there we have it!

a rainbow at night

Another Chapter in “Ibuprofen Always Helps”

Okay, so remember when I– … Actually, no, I don’t think I mentioned that on this blog. But on Facebook or Twitter, I had mentioned being concerned that my Liver Chi medicinal supplement–because it activates the immune system–might cause issues with the M.E. (myalgic encephalomyelitis). Why? Because in the past, things have gone like this:

  • Take steroids → M.E. gets better
  • Take immune-activating anything → M.E. flares

So I was thinking maybe it wouldn’t be so bad if I was on Nasonex at the same time, because they might cancel each other out, with the Nasonex lowering the immune system and the Liver Chi activating it. I started them at the same time and all was well. But, two days after stopping the Nasonex, I had M.E. problems. Coincidence, possibly; I’m not sure. But then this other thing started.

My heart palpitations went through the roof. From maybe one noticeable skip every other week, to at least one every hour. :\ I was very concerned, and I thought it might be the Biaxin because it can disrupt one’s QT interval and I sometimes have problems with those types of medications. My heart beat had been unnaturally fast, even when I wasn’t dehydrated. It averaged about 112 when lying down completely relaxed. And the irregular beats, well… Very prominent, made me cough every time. (Vagus nerve, cough, heart rhythms, all that goes together.) But then one evening several days ago, I needed an ibuprofen for a headache. Just 200mg to start with…and I noticed I didn’t have a single heart palpitation the rest of the night! I thought that was odd. The next day I woke up and took my Liver Chi. My heart went to racing again. After about two hours, I thought, I wonder if I take another ibuprofen… And I did, and my heart rhythm went back to normal again.

So, the past few days I’ve been taking ibuprofen with my Liver Chi doses, and I haven’t had any problems!

Then today I thought, okay, we have to make sure this isn’t coincidence, so I didn’t take the ibuprofen with the Liver Chi, and guess what: My heart rate started climbing again. I took ibuprofen, and sure enough, it yet again went back to normal.

I have a cardiologist appointment in a week and a half to find out what’s happening, but now I’m wondering, what is going on? Is my heart inflamed? Or my nervous system? What is happening that the liver chi causes a problem and the ibuprofen stops it, that connects to my heart and my heart rhythm? Is it M.E. related? Or something to do with the connection between NSAIDs and orthostatic hypotension? I’m prone to thinking it’s something inflammatory, because this only started after I stopped the Nasonex/stopped taking the only thing that was keeping my immune system from becoming activated by the Liver Chi. I’m assuming my body is needing the ibuprofen to take over that job, now. But I just had my bloodwork done, so we’ll see how my liver enzymes are holding up next week, also; I might can stop the Liver Chi altogether.


Re: Nasonex and my eye problems: It was just a coincidence, because my eyes are still giving me problems.

Re: My breathing issues: I have not had any of that since.. well, it continued on several days after my last post, and then stopped. Whether or not it might recur, who knows, but I haven’t had it happen since.

Another random problem I’ve been having is, once a week I involuntarily stay up til six, seven, eight in the morning, until I finally get sleepy and go to bed. I just don’t get tired, and nothing can make me sleep! After four weeks of this, I figured out it was the Flagyl, because it happens after the second or third day of the four consecutive days I take it per week. It’s ironic because when I first started Flagyl, all it made me do was sleep, and now…!

Re: My brain fog: Hasn’t been quite as bad lately; after I made that last post, things got better. Over the years I’ve noticed it seems to do this, cycle in and out. When it cycles out, I read tons and enjoy my brain functioning. I even took a test on my reading speed and got an above-average score! (You read 305 words per minute. That makes you 22% faster than the national average.) And I even passed the three questions they asked afterward! But you know the interesting thing? And this is how my brain has learned to function over the years of losing my regular short-term memory ability (plasticity is amazing): I didn’t answer the questions correctly because I actually remembered what the story was about, but I answered them based on what words I remembered seeing. When I first took it I was excited because I thought it meant I had reading retention, but, when I actually tried to recall the story, I realized I couldn’t. I remembered what I saw, not the actual information within. Just an example of how our brains can learn to maneuver around their deficits to figure out other ways to function.


Okay, enough symptom recapping. I finished my 30-day Challenge. It only took me..almost three months, aha, but I still got it done! Here are some of my final pieces–just quick blobs of watercolour, really, with the occasional photograph.

 

a rainbow at night

On Livers and Lyme and Dystonia…and Another Antibiotic Break

On Thursday, the 5th of April, I upped the minocycline to 200mg a day. For the next few days I only noticed a greater need for sleep. Since starting the minocycline in general, I had a greater need for lortab/vicodin (at least once a day) to deal with the head and neck pain (read as: severe), so that also got worse temporarily before tapering off into less-severe pain.

Mostly because of this, my sinuses were really bothering me (hydrocodone causes a release of histamine, and when you stop it, then you can get a rebound release of it), so I had to take Nasonex for several days–it helped so much, and by days Three and Four of being on it, I was outside taking pictures of flowers!! I figure it might have been helping subdue some of the herxing because of its immunosuppressive tendencies. After day Four I was able to stop that, too, since my sinuses had returned to normal.

Then on the 9th I got a fax from my doctor saying my liver enzymes were very elevated. This, after them being perfectly normal two weeks earlier, and me still taking milk thistle three times a day!! I was upset, but I had to stop all antibiotics again.

I don’t know if it was from not taking my antibiotics beginning that morning when I got the fax, or rebound inflammation from stopping the Nasonex, but I felt absolutely horrid starting that day, and did every day after/have every day since. We’re talking complete flu-feeling and just.. awful. It was the metaphorical equivalent of hitting a bear over the head once, and then standing there staring at it. Lyme is a very, very angry bear. To further my physical suffering, a few days later my Lyme flare up began! D:

And then an old Lyme-related friend came to visit me: Dystonia.

(I tried to kick it out–you must mean the house down the street; no Kit, here!–but, that didn’t work.)

And not just dystonia, but that special brand of dystonia with parkinsonism thrown in there that makes me unable to walk, that makes everything on my left side either fail and freeze, or flail and dance. (Why does Lyme like the left side so much? No one can figure it out, not even the doctors.) It began on the 14th, when I got out of bed, took two steps, and my left leg decided it wanted nothing to do with this “walking” business. Luckily, there are wheelchairs. I still had a lot of movement problems even wheeling about the house, but standing up makes it so much worse in general, even if I’m not trying to walk. It got worse on the 15th and 16th…

I wish I could adequately describe what this type of movement disorder is like. A dear friend of mine in Pennsylvania with Lyme disease has the exact same problems I do (also hypertonia, also brain lesions). A typical “episode” of this happening might start with me attempting to walk. A varying amount of time passes before I slow dramatically and then my left leg will start to drag. If I stand in one place it often curls inward. If I try to walk it is essentially frozen, or moves so little that I might end up walking on the tips of my toes to compensate. Something around my hip/thigh happens and my leg jerks upward, causing me to simultaneously fall forward, often twisting my neck to one side at the same time “for some reason.” I don’t always have to be walking for this to occur. I know low oxygen (or at least low oxygen ratio) makes this worse, because supplemental oxygen always helped in the past.

“A major principle of body movement is that all muscles have an opposing muscle. Movement is possible not just because one muscle becomes more active, but because the opposing muscle relaxes. …Rigidity comes about when, in response to signals from the brain, the delicate balance of opposing muscles is disturbed. The muscles remain constantly tensed and contracted so that the person aches or feels stiff or weak.”

Other times it involves my face and neck–like an episode of Bell’s Palsy that isn’t so much the nerves (I don’t think, at least) as it is the muscles contracting, and causing issues like facial grimacing, an inability to open my left eye all the way (lots of times I cannot look upwards, which is truly disturbing–I don’t think this is dystonia but I wanted to mention it anyway), and my tongue might tremor, etc.

This time, much to my dismay, my arms were involved, interferring with my typing. :( It wasn’t the M.E., and it wasn’t the neuropathy that’s started to invade my arms causing the weakness, but something different. (It’s probably impossible for me to put the difference into words, but I know what that feels like.) They were doing the same thing my legs did–gradually getting slower and slower and it was as if the nerves were failing to send adequate signals, where in my head I was sending them the action I wanted them to perform but everything was going very..very…..slow……… :| (But not the paralysis and takes-five-days-to-recover like the M.E. muscle failure; this is far more neurological.)

And then the 17th happened. Or rather, the night of the 16th, when I tried to sleep. I spent all night waking up every hour going “omg I’m going to vomit” and “omg why is everything moving” and then when I woke up once at 7am, the back of my head was killing me (figure of speech, of course). And thus began the cycle of the next five days. But at least after about the 18th, the dystonia and parkinsonism got better and I could walk again. Oh, the things I had happen every morning… One morning was like I described above; for another, it was all I could do just to roll onto my back and take medicine; for another there was gastrointestinal nerve problems that immobilized me in pain; then to add insult to injury, I woke up dehydrated, because I usually do during Lyme flares. It has been an incredibly difficult couple of weeks!

What got me through it was knowing that it would pass.

And it did.

The 22nd I felt good enough to take a ride to the city, with the help of adequate medication for pain and inflammation. Right now I’m waiting for a supplement to arrive (tomorrow), so I can resume antibiotics.

I can’t thank God enough for such an absolutely amazing doctor to get me through all of this. Especially after so many years of people who didn’t know what they were doing, no idea how to help me, or just passing me around from doctor to doctor. (From primary to cardiologoist to neurologist to immunologist to infectious disease specialist to another cardiologist to another neurologist to a movement disorder specialist to…) I feel safe in God’s hands and my LLMD’s experience to get me better. He called and told me this herb collection to order for my liver, called Liver Chi. He says he has patients with Lyme-induced MS who are on triple IV antibiotics, their liver enzymes inevitably going high, but who can’t stop treatment for fear of their disease progressing. He thinks I am in that group with the rate that my symptoms progress the moment I stop antibiotics. And if this supplement (a mix of chinese herbs) has been able to bring theirs back down to normal, on all of those antibiotics, I’m sure it can help me get back in treatment! So he said to take a two-week break (which I have), and.. essentially, don’t wait, get the herbs, and resume treatment whenever I got them. And of course keep checking my enzymes.


I’ve been indulging my creativity to help me cope, so here are a few pieces:

a rainbow at night


PostScript: Things I want to add into this post but have no idea how:
  • Ibuprofen always helps. Always.
  • My PCP says I should tell my cardiologist about the fact that I feel like I’m going to pass out when I take a deep breath–I actually had to lie on the examining table this time, which is new. My first guess is my usual lack of my heart rate variability and the fact that it’s supposed to vary when you inhale deeply, but mine often doesn’t… But that’s autonomic neuropathy for you.

Mini-Update on Treating with Flagyl (and a painting)

Let’s see if I can suppress my urge to ramble and post the basics of what’s been happening. I shouldn’t need to go into too much detail because there’s not much more than this that I’ll need to know for future reference.

My insurance covered Tindamax up until January 2012…so they denied me coverage for it. Twice. I didn’t want to stir up trouble or questions, so I told my LLMD not to worry about appealing it again. I instead started on Flagyl. No big deal, right? I’ll just be on a less-effective, more toxic medication, for longer, because of no Tindamax. Regardless, it’s what I have to work with, now! The first week’s pulse brought out a burst of my neuropathy after each dosage, and worse neurological symptoms in general, such as a terrible ptosis of my left eye (it was the worst I’d ever seen it). After that, everything stopped, including my previous symptom progression, and now I actually feel worse on the days I’m not on it…! (This is the last thing I’d expect to feel while on Flagyl!!) But speaking of which…

My routine liver panel has revealed my enzymes are high. Now, they’re just a few points above the normal range. But when my usual, pre-antibiotic numbers (or pre-Bactrim, I should say, since that’s what made them start rising) are in the high teens, and now they’re in high forties and fifties, that’s triple what is normal for me. My LLMD is on vacation right now (which he really does deserve, but goodness, out of all times for me to need him!) so I can only imagine what he’d tell me to do. Which is take a two week break and get the enzymes within normal range before continuing. An LLNP online thought it’d also be a good idea to break. So I upped my Milk Thistle to three times a day and stopped everything but my vitamins, and hopefully within 2-3 weeks I’ll be able to start this Minocycline in concurrence with Flagyl.

My left sided twitching has been flaring the past week. It hasn’t gotten to full-blown-dystonia level, yet. I had my “three weeks of headaches” end, then a 4-5 day flare up with the Lyme flare, and I’ve since been fine, with no headachess for about a week. I can’t think of any other remarkable symptom stuff… Oh! But my heart functioning is the same as last time, says my echocardiogram from last week. :)

And last, but not least, my site (if you haven’t noticed) is now arainbowatnight.com! :D

  a rainbow at night

Almost finished with bartonella treatment!!

I used to post much more often than this, I know, but… Things are somewhat monotonous! I don’t have to constantly be on top of symptoms every five to seven days to post updates as regularly. Or at least I don’t think I do… Last month, around the 5th, and then the 10th, I had the same symptoms as this month, around the 5th, and then the 10th… I’m not sure what that’s about.

The past few weeks I’ve still been antsy over my random symptoms. Flu-like, fever (99.5 on the 6th–probable Lyme?), severe headaches, neckaches, dizziness, legs going very weak/requiring wheelchair, POTS, poor mental state. All very possible Lyme symptoms! But this is my last chance to make sure there’s no reliable pattern before we stop the bartonella treatment. These are possibly my last few days on Rifampin, after being on it a year! I also don’t think I’d be able to tolerate a maintenance dose of my Bactrim (i.e., two single-strength tablets per day) plus the Minocycline and Tindamax I think he’s switching me to this week… But! I am comforted by the fact that Minocycline has bacteriostatic action against bartonella (and mycoplasma), so even if there are some remnants, they won’t be able to replicate! :)

At any rate, Lyme is being.. interesting. I have not have a headache for about a week! Which is very ironic, because they’d otherwise become daily events! (Also ironic is I didn’t have a headache the last time I posted!) I just don’t get the bartonella-related headache anymore, the ones that hurt in the front of your head like a sinus headache might. I have about half of the symptoms I had at this time last month. The inflammation is way down so I haven’t needed any ibuprofen. Severe fatigue for several days, weak legs, numbness in my legs, episodes of arthritis, an internal tremor all day yesterday… What has surprised me with its reoccurence is the sensation of a bruise on the back of my left ankle, just like last month! It’s not an actual bruise, I don’t think, because it just spontaneously happened while I was lying down, and then I was limping the rest of the night. It makes no sense, but it’s obviously something Lyme related. It’s like achilles tendonitis that only lasts one night, haha.

I don’t have the results of my thyroid ultrasound yet but the technician said I only had like three little cysts??? That’s very good!

I leave you with a quote from Ralph Marston. :)

“Frustration comes from focusing on what you cannot control.
Achievement, on the other hand, comes from focusing on all the useful and valuable things you can do.

Resentment comes from seeing yourself as a victim.
Effectiveness comes from stepping up and taking responsibility.

If you constantly complain that life is unfair, you’ll blind yourself to the best opportunities.
Yet by simply accepting that what’s done is done, you’ll find a way to make the most of it.

Don’t waste your time arguing and fighting with life.
Instead, invest your time and resources in inspiring and encouraging the best in yourself and in those around you.

There is good, positive, fulfilling value to be lived every day, in any situation.
Choose to be the person who shines a light on that potential value and who brings that value fully to life.

Let go of the frustration, resentment and despair by letting the positive possibilities fill your awareness.
Embrace and enjoy the immense power that comes from taking full, unconditional responsibility for all you are and all you experience.”

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!

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 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. 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 determining my disability status what level I think I’m at, because 50% recovered to me, just means literally being able to take care of myself and my basic needs, like eating and bathing!

None the less, since my last checkpoint, I am for now at: 15% physical ability, 15% cognitive ability, and 40% symptom severity. As always, this is not constant: I have bad days that are worse and good days that are 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 random post with some pictures I took on a day when I was bedbound, as well as one I took when I wasn’t! Also, 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