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 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

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). Also, some random quotes by me, because, why not.

  • 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.

~*~ Life is like Music. If you combine a few key, simple
elements in the right way, you get beauty.
~*~

  • 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. Also, decided that one day I will own a professional camera.
  • June 9th: Shaking for most of the day with very visible tremors.

~*~ Acceptance doesn’t mean we sit back, stop fighting, and
give up hope. It means we acknowledge truthfully
where we are and how we feel about it.
~*~

  • 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

Part two: Where we’re at now.

I’m having a random moment of lucidity, so I figured I’d try to type this entry. In general I’m still not “recovered” from everything that’s happened. I feel very.. I think fragile is a good word for it. Still not back to my pre-hospitalization level of functioning, but not a phone call away from going back, either. Everything’s up in the air with this weekend being my next bartonella flare, but so far so good. And like someone on the Under Our Skin documentary said, it’s good to try and keep it in mind that these things will be temporary. I’ll get most of these abilities back, if I just keep fighting… I’ve been through this hell before… Just not quite at this level. But we’re all the wiser for it.

Probably the best news of all is that, since I decided to take my antibiotics this weekend so I wouldn’t encounter the bart flare unprotected, I’ve.. well, started back my antibiotics! This weekend I’m on 200mg of Doxy, but for the long term I may have to cut that in half, at least for right now. I’m not sure what my LLMD will want me to do (I speak to him Wedneday), but I’ll be on SOMETHING, and that counts. I’m unsure of my bloodwork, which means I don’t know how my liver is handling this, but we’ll be getting that checked on Tuesday. If things are still not functioning best, I may have to stop again and take a longer break… I’m trying not to think about it, and just focus on happy thoughts. I’m also not back on my herbs yet, but those will be added as soon as possible. My brain really misses the olive leaf extract.

A lot of my friends have been asking me what will happen if I’m not on my medicine… Well, I’ve been saying it online and saying it to people in person for a while now, that if I don’t take it, I.. well, unless a miracle strikes, I won’t survive. This recent hospitalization, and finding out the test results, have brought this fact home to all of us. I’ll develop an MS-like illness (which I’ve already done), acquire further heart problems (which I’ve already done), and die. Having M.E. means I can’t fight things off like others can, and the disease itself takes about 30 years off my lifespan, but with these infections progressing as fast as they’ve been, I won’t get the chance to find out. So that’s what will happen if I’m unable to tolerate treatment. But as long as I’m able to handle even a little bit of medicine, I can eventually improve, or at least not get any worse until I’m able to tolerate higher doses of medicine. The risks are of course, damage from the antibiotics, but compared to the alternatives…? You can survive damage to kidneys or livers. Brains and hearts? Not so much. That’s why every treatment failure is such a letdown. It’s essential that I get this treatment now, before something truly terrible occurs.

Thursday I had an appointment with my neurologist. I think he’s given up on me. I’m too complicated a case, and he’s just not sure what to do about it. He gave me the name of a new neurologist that’s in my city. As far as the brain lesion, he’s trying to get in touch with the neuro-radiologist who discovered it, and find out why no one mentioned it before now! But otherwise he just didn’t know what to say, and it was basically a case of “please see another doctor.” He also couldn’t speculate on whether or not the spot had anything to do with these “episodes” I’ve been having, but he knows the doctor who took care of me in the hospital, so they’re going to talk about my case and I suppose get back with me this week. Ultimately, no answers, but I left with medicine for seizures and migraines, Topamax and Treximet. I got a Migraine followed immediately by one of the “episodes” as I was leaving his office, so I got to try out the Treximet right then and there. First Migraine I’ve gotten rid of without caffeine in over 12 years! The Topamax is primarily a seizure medication, but it can reduce the number of migraines as well, so even if I am having seizures that just didn’t show on the EEG, I’ll be covered. Amazingly, I’ve had minimal numbness during the past two days, and no “episodes” yet! I’m not sure if it’s just timing, or the Topamax, but I am so, so happy to be on it. Hopefully it will calm down my poor nervous system during the “headache phase” of my treatment, which is the first few months, when everything is really irritable and prone to spazzing. (Well, like we’ve seen.)

In other good news, I can tolerate drinking Ensure again! But I’m going to limit it to one a day and hopefully that will ward off any further problems. So yes, that’s great news as well! I’ve had a normal appetite and limited swallowing difficulties, so we’re all thrilled.

Slowly but surely I am regaining strength, which I will desperately need in the following weeks. On the ability scale I’d say I’m at 4% physical activity (3-5), 7% cognitive ability (5-10), and 7% symptom severity (5-10). We just need things to keep getting better… Considering that the antibiotics will make me worse at first, I’m not sure how that will happen. But that’s why I’m going to be on such a small dose. Even if it’s baby steps, we have to do this.

Also, completely out of the blue, someone on my forums told me there’s a Lyme Disease support group twenty minutes from me. So we will be attending soon! A Lyme group in my part of the country, how ironic. Turns out this part of the state is sort of infested, which is kind of crazy considering the CDC only reports a few cases per year, if that? Things like that make me wonder if a random tick really was the cause of my Tourette’s as a child.

This doesn’t blend in at all with the rest of what I’ve been typing, but… My friends have surprised me. I know that might be wrong to say in a way, because I’ve known a lot of them for almost or over a decade, but… I guess I was still halfway expecting people to not care or think I was important. Or maybe that’s the bugs talking, I don’t know. (Probably. That sounds bug-like.) But everyone has been so supportive, and sweet, and understanding, to the point that I almost just want to cry. It’s comforting to get to this stage in my life, where you honestly have no idea what’s going to happen, and know that you are surrounded by people who genuinely love you, just for being you. ♥ It keeps me going, to know that there are people rooting for me, and not just passer-by support like you get on a Twitter list or support forum, but people who consider me a major part of their life, even part of their family. I love them so much. ♥ I never could have imagined things would get like this so fast, but that in the midst of it, I’d be surrounded by close friends on every side. To someone fighting illnesses such as these, which often rip away all of your friends and most of your family, that is some sort of miracle in and of itself.

a rainbow at night

Small improvements, pill schedule, symptom recap

So, recap, I’ve been on Rifampin for one month. Last time I updated, I had just added 100mg of Doxycycline to the mix during the night. The Rifampin dose the next day caused a big herx. I haven’t had that severe a reaction since, which is good. I’ve actually felt relatively (relatively!) okay since then. But I do need to mention something that happened, yet again:

When the excruitating headache started, I needed a Lortab (Vicodin). I know I’ve mentioned it repeatedly, because nearly EVERY TIME I need this pill I end up having to talk about how I randomly ended up feeling less sick in general, and thus I get excited to try Low Dose Naltrexone (LDN) all over again. My Lyme treatment needs to hurry on up, so in a few months I can start that potential therapy! I think it’s going to be awesome.

I’m seriously wondering whether my feeling so incredibly terrible last week could have been at all influenced by my headaches having temporarily died down from Lortab-level to Fioricet-level, which meant no needing opioids. And there’s that little fact that not only do opioids relieve severe pain, but they also alter the immune system. For instance, long term use of opiates is tied to immunosuppression and a greater risk of infectious disease, even the progression of infectious disease, including AIDS. And yet LDN, which also works with opioid-receptors to upregulate the body’s version of opiates (endorphins), has been shown to slow the progression of AIDS and auto-immune diseases. So really, there’s no telling what all is happening that makes me feel so much better. I just.. once again, really, really hope the improvement I see from opiates can also be given to me by LDN.

Symptom wise, my intestines still hurt. I can’t blame the Doxycycline because it started before I took it. I hope it’s something minor like inflammation or adapting to my new diet changes and that I’m not developing any major problems like a c. difficile infection, which is what WebMD suggested to me when I randomly ran through my symptoms. (Then again, it’s WebMD, which also means I could have a brain tumor, right? Haha.) I’d been having several episodes of intense nausea and motion sickness, but I haven’t had one since Friday night. (Which is unsual… To have your nausea stop when you start taking Doxy. Ha!) In case it starts up again, my anti-nausea ginger gum has arrived, which is amazing stuff. Oh, I also haven’t needed my oxygen since Thursday, either. I still require my wheelchair after taking the Rifampin, but I can get out of it earlier in the day than I had been when I first started it, and in fact yesterday I stood up for several minutes! It felt so strange, but it was nice. I did notice that today’s leg (foot?) dystonia was worse when I did try to walk, so it’s more because of that and POTS that I need it lately, instead of the horrible leg weakness. And.. I’ve had several episodes of arm numbess, which I know I’ve recorded in here before, but I’ve no idea what it’s from. I had it on January 31st that I last wrote down, and then I had it again last night. I think I remember another episode of it between there…

Today I organized my medication/supplement chart that I’ll be working with starting this Thursday.

  • 11am: Coffee (half regular, half decaf)
  • 12pm: Doxycycline 100mg w/ FOOD; Olive leaf extract 500mg; Vitamin C 1g; Aloe vera gel (5g, pure inner leaf gel)
  • 1pm: Rifampin 300mg
  • 3pm: Probiotics; Antifungal (which changes every three days)
  • 8-10pm (dinner time): Olive leaf extract; Vitamin C; Ubiquinol 100mg; L-carnitine (fumurate) 1g; Calcium/magnesium/vitamin D/zinc; Vitamin D (extra 400 i.u.); Aloe vera gel
  • 11pm: Doxycycline 100mg; Rifampin 300mg
  • 1am: Probiotic; Antifungal

As far as I can tell, my father will be responsible for bringing me coffee and food to take with the Doxy in the “mornings,” then my mother will be responsible for food in the evenings/night. It’s “only” 22 pills per day, but these are all things I need, so I feel fine about taking them (compared to when I used to be on more that weren’t even guaranteed to lead to any improvement). I also supplement potassium throughout the day in my water, and add iodized salt to everything (including water); I do not know if the cysts on my thyroid stop multiplying because I increased my iodide intake or because I finally started antibiotics, but I’d hate to stop the iodide and have them start up again! Time will tell.

 

a rainbow at night

I am on a roll!

Today I phoned my mother from my room and asked her if she wanted to go to the store to check out one of the sales. And of course what do women do together? They shop for underwear, of course! Amazingly, her schedule was clear, and we actually went!

Now, I don’t want to give the illusion that today I’ve felt “good,” because… Ugh. Just.. no. At this moment I’m vehemently trying not to vomit, the room is spinning, and I probably shouldn’t be typing at all. My legs will not support me further than the five feet to the bathroom, my fever has been at 99.2, I’m drinking ginger tea like it’s candy, and keep having sudden “attacks” of nausea and dizziness that come and go, as I’m wont to do when I’m in treatment via herbs or prescriptions. I’m not stating this to complain, but it’s just fact that this is not what I’d normally consider a “good” day. But if being well enough to sit up in a wheelchair is my bonus, I’ll take it! My blood pressure is stable, and thus I was once again able to be upright; so much more is possible when you’re getting adequate oxygen to your brain! We shopped for about an hour and a half and each found some pieces that fit. ♥ …

And then I got a migraine. The third one within a week’s time. The 31st: Went somewhere. The 4th: Went somewhere. The 7th: Went somewhere. First off, I almost feel obligated to mention that, this is pretty awesome, considering all I’m going through! I think it’s a blessing that I can be back on my herbs (olive leaf extract), have various energy-aids (hydrocodone or caffeine), be able to take Ubiquinol (to help deal with mitochondrial crashes), and have mobility aids (wheelchair + scooter) that are enabling me to make the most of what I still have and can still do, whatever that may be. After all this time, I’m a pro at making the most of whatever I can do on any given day, I think. But I’m beginning to wonder why every time I go anywhere, I return with a migraine. Is it the lights? The chemicals? The exertion? What?

So all in all, mum and I got bonding time, pretty underwear, and a trip into the outdoors. It was fun, and spontaneous, and I hardly ever get to be spontaneous! =) I think it was worth the migraine and other sickness.

Also, finally finally finally the Lyme-headache has relieved itself from my skull. It hung around until yesterday evening, for a total of I think five days? That’s a record. So good news, that it’s gone.

Ah, hopefully I can keep with my good streak, and continue to find relatively-easy recovery from my activities. Until next time!

 

a rainbow at night

Lortab, outings, and strange temperature flucuations

Yesterday our goal was to make it out of the house to take me grocery shopping. I managed to get dressed, so off we went! But when we got there, all the mobile scooters were either taken, or charging and not available for use yet. So mum came up with the idea that she would push me in my shiny red wheelchair, while my niece Nikki would push the shopping cart alongside us. And together we roamed around for about an hour, collecting my shopping list. We actually had fun doing this, which was amazing. We made it a family affair, and it was just.. nice.

When we originally left, I didn’t think I was going to make it. My heart symptoms are worse and thus I couldn’t breathe well without said pressure in my chest, and.. it wasn’t looking good for me staying upright. =\ But THEN I found half of a Lortab in my purse! And so I took it, and was able to “go shopping.” (Granted I’ve been on Vicodin for four days now because of that persisting severe headache, but yesterday it was mostly gone.) I’m sure I’ve mentioned before, but hydrocodone has this additional effect of giving me more energy and better cognitive ability. I’m always amazed at how much half a pill can work at improving my overall level of sickness, and I’m not sure what it was doing in my purse, but I was so glad it was there! It took about half an hour to work, and then I was able to sit up, and breathe, and think, and.. function. Incredible. I stayed in the car while Mum went into the other places for me–post office, pharmacy, discount store–and by the time we arrived at the grocery store, I was ready. (This effect that hydrocodone has on me is what makes me eager to try Low Dose Naltrexone, which also binds to the opioid receptors.)

Truth be told it would have been smarter yesterday to not override my body’s signals, and go back home, because now I have to pay the consequences, but… It’s not my fault that everything I do comes with payback. I don’t have the option of pushing myself 99% of the time, unless it’s due to medicinal intervention like hydrocodone or caffeine. And everytime I use one of those, I have to pay extra for it. But really, sometimes you just have to pay the consequences, lest I’d never get to do anything. I’d never shop or get to the doctor or be able to take a bath… That’s just how it is. I consider myself lucky that I am able to recover from it, instead of being at a level where every trip out of the house would incapacitate me for the next few months. And honestly, if I didn’t have my medicine (olive leaf extract, ubiquinol, l-carnitine), I know I’d be at that level. A couple of months without the OLE, and a week off of the co q-10/ubiquinol, taught me exactly how much I depend on them…

So after the trip, on the way back home, something odd happened, that hasn’t happened in about two years. My temperature dropped to 97.8°F; I was freezing. My temperature goes up and down between high-98 and low-99’s, but it hardly ever drops into the 97’s in the middle of the day. About six hours later, it went back up to 98.6°F, and then half an hour after that, down to a normal 98.2°F… This morning I woke up at 7am, took my temperature, and it was 97.1°F. I took it again when I woke up at 1pm, and it was a normal 98.6°F, where it’s been most of the day with mild (normal!) fluctuations. The last time this happened was also after a shopping incident, so I can only assume this occured because of the forced exertion (or rather, me overiding whatever level of sickness I was at before taking the hydrocodone).

Also for the record I am now on my 12.5mg dose of Zoloft to control the OCD and PMDD. This was started on the 1st.

I think I got a migraine last night, but because of my other headache, I didn’t notice that’s what it was until much later. But I had such typical migraine symptoms! Right-sided pain and facial numbness… I don’t know how I didn’t realize what was going on! (Ironically, last time I was in Walmart I got a migraine, too. And the time before that, as well. And every time I go in there my nose starts to run, no matter what season it is. I wonder if that’s significant? I hope I’m not developing some sensitivity to the place. But anyway…) Not paying attention and thinking it was just my other severe headache (which is still trying to go away completely), I took pain meds for that… But of course it was a migraine so they weren’t very effective! They helped me cope, but did nothing to actually alleviate it. When I woke up “this morning” I finally realized where I’d gone wrong, and lucky for me I was able to take migraine meds and they still worked to get rid of it. In the past I’ve had terrible luck with stopping migraines after they’ve begun, so this really was quick lucky!

Ah, and that’s enough typing for me today. I need to be preparing for whatever sort of crash I may get after yesterday.

a rainbow at night

A small outing, plus a migraine.

Backdated entry. Originally published in my personal journal, but also posting it here for its health-related significance.

Yesterday we made it to town. And.. I can’t stress enough how none of it would have been possible without my mother (who is my primary caretaker). She went into most of the stores for me so I wouldn’t have to get out–like to JcPenney to return something, and to the post office to mail things for me–until we got to Target, where she wheeled me in to use a giftcard! That was fun. I was wearing red, so I even matched my wheelchair! Ha! I then got out at Walmart for some minor grocery collection; I’m a pro at driving those little scooters, now!

As for me, I’m just.. really, really weak. As to be expected. I’ve been shaking since yesterday morning, but with my family’s help I’ve barely had to lift a finger so I’m sure after a few more days I’ll be back to my pre-crash levels of weakness; right now I have nothing. But what HAS improved is my blood pressure! So I can be upright a lot more, which is why we were able to leave yesterday.

[Edit: (11:20pm) I'm assuming the weather is why I have a migraine? There is a strong front coming through...]

a rainbow at night

Christmas, symptoms, and recovery

So much is expected of Christmas posts when you have a publicized “problem.” Everyone is curious about how you coped, or how things were altered because of it. As an advocate for the very misunderstood illnesses I live with, perhaps some might expect me to explain all that I wasn’t able to do–to drive home the message of just how bad these illnesses are–like many others write about. Maybe it could raise awareness to the fact that very little is being done to stop it from happening to your children, or your best friend, or even you? Like a TV commercial for the ASPCA about all the animals that are freezing to death while yours are inside, warm, I see a lot of these types of things related to M.E. and Lyme disease around this time of year. Such as “humorous” Christmas song rewrites, changing the words to suit the various symptoms of the disease. (While everyone else if off doing those things, I’m doing this…)

I can’t think badly of anyone using this time of year for these purposes. I know why people make those posts, and I know the reason why some find a strange sort of comfort in them… But I don’t.

Perhaps I owe it to realizing how bad things could be, given my situation, and thus appreciating how they aren’t. Perhaps I owe it to being reminded daily of how special even the simple things are, or that I try to consciously think about that even when things are going better than usual. Or maybe I’m just naive and give people too much credit for understanding that these diseases do alter every single aspect of how we celebrate any special event, without me having to bring attention to that fact over and over again… Do people realize? Maybe I give others too much credit for knowing that.

My Christmas was wonderful. I feel like I was given a sort of early Christmas gift, even. First off, I was home and not in the hospital (and.. well, alive), and I’m making slow but steady improvement. But also, my candidiasis problem is gone… Like, completely. So I could eat whatever I wanted, and enjoy the once-a-year holiday cookies, et cetera. No more food restrictions. No more feeling like the next thing I eat could upset whatever delicate balance my body was striving (and failing) to attain. Now, granted I’ll still be eating like a diabetic because it’s just plain healthier no matter how you look at it, but… It’s nice knowing I can eat a normal cookie every now and then and it won’t cause long-lasting harm. ♥ Now I shall simply continue maintence therapy, consisting of alternating Nystatin and Candex every week, to keep things staying normal. Next month I should be able to resume antibiotics, after the candida culture results come back.

I’ve made friends with my wheelchair, now. It was hard for my family and I to take/witness that first trip, but after the whole hospital thing, instead of it being a symbol of how bad things had gotten, it was a great thing to be wheeling me out of my room! “Oh look, she’s good enough for a wheelchair ride to the kitchen!” sort of thing. So now we’ve pretty much become accustomed to it, taking me to the living room for tea or whatnot. My niece thinks it’s hilarious the way I move my feet “like a mouse” when scooting myself across the kitchen…

I’m still battling my stubbornness however, because of course, it’s me. Sometimes I get stuck in the kitchen or the living room because I misjudged my ability level. Which somehow makes me feel like I’ve failed, because they’re just.. what, twelve meters away? You don’t want to think you need help walking forty feet, and it’s so much easier to walk there than to maneuver the wheelchair about, or ask someone to take you there… Especially if you could have done it half-an-hour ago, but suddenly you can’t? How do you keep up with that? But I’ll learn. I’m bound to get stuck many more times, but I’ll learn. And hopefully I’ll do it before I harm myself, because nothing would make me feel more dumb than being sick actually because of something I did (or didn’t do).

As of yesterday I feel I’ve recovered enough from the hospital ordeal, so I started my daily herb and supplement regimen. Which would be:

  • 500 mg Olive leaf extract, twice a day
  • 1 gram of Vitamin C, twice a day
  • Aloe vera gel capsule, twice a day
  • 100 mg Ubiquinol (active form of Co Q-10), daily
  • 1,000 mg L-carnitine (fumurate), daily
  • Vitamin D3 (I’m not deficient, but I get no sunlight), daily
  • Calcium, magnesium, and zinc supplement, daily

Anything else I take depends upon the day, such as the Candex or Nystatin or Grapefruit seed extract. I’m going to add the Houttuynia back later, but I wanted to trial run everything else before I start attacking the bartonella again. (Speaking of: My bart symptoms are still–perhaps even increasingly so–very mild… I’m wondering if I should be happy they’re going away, or scared that they may jump out at me again when I treat the Lyme disease. It’s anyone’s guess, but my family  and friends do appreciate me not yelling at them quite so much in a bart-induced rage!) I started the Ubiquinol and L-carnitine back on Christmas, because of all the activity. Needless to say, it’s been very helpful, though of course it doesn’t mean the crash still won’t happen…

As for how I’ve been feeling since my last update (besides the obviously expected things): For several days after “the hospital incident,” I was extremely dizzy, to a ridiculous level. It’s an unnerving dizziness that feels like it’s coming from inside your head? It’s difficult to describe. I was also horribly fatigued, but both of those things have left after ibuprofen and a lot of sleep + rest. I wore earplugs almost constantly up until yesterday. (Which made it a little easier to listen to music, actually… Yes, with the earplugs still in.) I’m not sure if my extreme sensitivity to light and sound was due to the M.E. or other infections; an overactive nervous system was one of the things that became more frequent before I started treatment.

On December 23rd I was a little Lyme-y; my upper spine was hurting and my arms would randomly go numb and weak… Mild fever… Also VERY thirsty… But that was basically it! Later that night we actually took a short car ride out to see the Christmas lights.

Christmas night I started having arrhythmias and accompanying dizzy spells… Which was startling because, it was the same type of dizzy spell that has been happening off and on the past few weeks. Now I’m wondering if this “dizzy feeling inside my head” could actually be coming from my heart? I have no idea, but whatever the cause, palpitations + dizzy spells last night basically meant, I’d had too much exertion, and needed to stop what I was doing, and rest. Immediately. So I did.

It should go without saying that now, after the (albeit mild) Christmas activity, I’m having increased muscule fatigability and weakness due to the crash. My legs are not wanting to work with me, my arms give out very rapidly, and.. today I had the first non-bath since before I initiatially starting taking antibiotics, when I was too ill to properly bathe and had to rely on.. I guess you call them sponge baths? When I was in the ER they sent us home with some microwavable bath cloths, so it wasn’t entirely unpleasant, actually! The shock factor has worn off, since it’s not the first time that “it’s come to this.” I can sit up, so Mum washed my hair in the kitchen sink, with the faucet sprayer! Haha. Our inside dogs looked onward, very concerned as to why their owner was suddenly taking over their bathplace.

But yes, I can be upright, so I’m happy to say at least my POTS-related symptoms are improved. I’m just waiting on my muscles to recover, and be able to tolerate more. Tomorrow we are planning an outing… Given the state of my crash I’m not entirely convinced it’s a smart idea, but we’ll see how I feel tomorrow. I may not be able to use my arms for much, and my legs are not happy, but I can be upright, and I can wear earplugs as I always do when I’m “out.” I think I could do it… Oh, and since being back on my herbs the dystonia symptoms are returning in the evenings. I didn’t expect it to happen so soon!

And finally, all of the tests I had run from my endocrinologist, were normal. All.. what, eleven of them?.. including the ACTH stimulation test, so I do not have adrenal insufficiency. I’m.. glad, in a way, because like I said, had I that disorder I would not have been able to treat it without risking an imminent decline. But I’m also not glad, because it just means yet again that nothing else was wrong, that nothing else was contributing to my body’s dysfunction except what I already have… The doctor has mailed me copies of all the results and I’m waiting for them.

a rainbow at night

Oh, little mysterious, vanishing bump…

Last night I developed a mysterious fluid-filled bump on my lip. I’ve never had that happen before, and I was scared it might be a cold sore/fever blister… Which would have been really awkward because, I’ve never had one in my life and to start getting them all of a sudden just wouldn’t be a good sign at all. My L-lysine was in my mother’s room (your body needs more of this amino acid during herpes virus flares), so instead I took 1200% Vitamin C last night, and fell asleep early from overwhelming exhaustion (not from the Vitamin C, though). Today, the bump is.. gone? And I also felt much better when I woke up. I’m thinking of continuing the Vitamin C dosage (at least 500% daily since I’m constantly dealing with infection) but as far as the mysterious bump… Well, I just don’t know. I shall ask my infectious disease doctor about it on.. ah, tomorrow!

Yes, tomorrow I go back to him and see if that syphilis test is positive! what happens, and Thursday… Oh, wait, I just searched my tags and realized I never wrote about my endocrinologist visit on the first.

Well, it went great, aside from the usual almost-passing-out part. (It’s amazing how much your nervous system and body in general have to adapt to all the stopping, turning, and accelerating that’s associated with a car ride. But anyway.) He said it’d be a good idea to get tested for adrenal insufficiency (note: this is not the same as “adrenal fatigue,” which I honestly don’t believe exists; either you have enough hormones to function, or you don’t). If he can’t find anything wrong, he said he’d at least put me on Florinef to help with my blood volume problems and dehydration. I was thrilled about that…until I realized I can’t take it because it’s a steroid, and is completely counterindicated for someone fighting infections like I am. I also found out most people with CFS aren’t helped by it…but of course I haven’t any idea if that applies to people with M.E. or not. Regardless, unless my life is in immenent danger, I cannot take anything that will suppress my immune system, such as steroidal medications. This also means, if I do have adrenal insufficiency, I’ll have to weigh the risks associated with not treating it, because guess what the treatment for AI is? Yup, steroidal medications.

So right, on Thursday I have to be at the hospital at 11am to get more tests and bloodwork (over 11 of them just from him, not including whatever my Internist/ID will want; gah!) and have the ACTH stimulation test. I told the endocrinologist about my eternally-backwards sleep schedule so he agreed that having it done whenever “my” morning is, would be best, and wrote an exception letter for the hospital.  This test… This test I am nervous about, but at least now I’m off any medications that could create any potential cardiac complications as the result of an interaction (read as: Sporanox), so I don’t have to worry about asking them to have a cardiac arrest tray on hand… Haha… (I joke, but I’m serious. If being startled while on Diflucan caused “that” incident, I wouldn’t want to know what could happen being chemically-startled while on Sporanox.)

Then Friday I should be nice and crashed after all of Wednesday and Thursday, haha, so the necessity for the wheelchair should be pretty obvious by the time I get to my doctor on Friday morning (yes, morning) to ask my primary about it. My niece thinks it’s a wonderful idea. But my father is a little upset about it, having already watched and lost one of his daughters to multiple sclerosis, a very similar illness to the one(s) I have. He always wants to make sure I eat enough, because towards the end she just stopped taking in nourishment. I admire his strength, truly, to not completely crumble after having gone through that, and having to watch it repeat fifteen years later with his other daughter. I doubt there is any worse feeling in the world, than to lose a child… I think of her and draw strength, sometimes. She went through it, so I’ll deal with it. I know she is around us, looking over us, and there to comfort me as I go through these similar symptoms. ♥ It sounds redundant, but she was such a kind person. The last time I saw her, she was smiling…

a rainbow at night

When things don’t work

The past several days I’ve encountered more suffering and symptoms than is typical, including more Postural Orthostatic Tachycardia Syndrome (POTS) and me losing a fairly decent chunk of time (read as: Tuesday), which hasn’t happened in a while. Today was the first respite I’ve had from this mild progression. I had a few things I was going to write about, like what it’s like during “A Day of Bartonella,” which was raging on the 28th/29th of November, and a small rant I had in my head for a couple days about.. something I can’t remember anymore, but… I can see now that’s just not going to happen. So I’m going to just let it go. (Which is a small triumph in and of itself, really!)

Basically, starting my herbs did not work out, I herxed, flared terribly, and got cardiac irregularity after just a couple days, so I wasn’t able to continue them during the final week of my Sporanox like my doctor wanted me to. I’m not pleased with this, but… What can I do? I am doing everything possible to beat this, and if it’s not enough, it’s not enough. I really have to stop feeling personally responsible every time my body fails me, and get rid of the idea that it’s somehow the other way around.

Anyone with chronic illness is usually surrounded by one or many people who are convinced if the “sick person” just did things their way, all would work out. Even though you’ve spent the past decade with your illness and know it inside and out, still, there are those who think a quick “What do you have to lose?” and “It can’t hurt to try, right?” are sufficient evidence for you to trial-run whatever happens to be circulating on Google. (And the truth is, we’ve learned the hard way–either through personal experience or shared stories–that what you don’t know CAN hurt you, so it’s frustrating, to say the least, to hear someone else willing to take a gamble on our delicate health, all because they haven’t yet learned to deal with their feelings of helplessness.) So of course if you didn’t do it their way, if you didn’t give their ideas a shot, and you got worse, it must be your fault, right? Wrong.

My family is one that is lost to the mechanics of all the diseases I live with, and they often do not understand the things that I have to do to try and get me well; another common concept amongst people with complicated conditions. I do try to explain how things work when I’m able, but I can only expend so much energy on it. Having moderate-to-severe cognitive dysfunction at any given moment means The Art of Explanation isn’t always on my ability list, and if it is, it’s usually not at a time when anyone is around to listen. So they are understandly confused when all these things that are “supposed to” work for me, don’t. I tell them, I know what I’m doing… And the truth is, I do know what I’m doing. I could write a book on these illnesses by now, I’m sure. But I guess somewhere along the line I’ve equated “knowing what I’m doing” with “I’ll get better if I do this.” So when things aren’t getting better–like now–I feel as if I’ve somehow let down my family, as well as myself…  But I think I’m finally starting to realize that is false. You can do everything right, and it still not work. I think that warrants repetition, even.

You can do everything right, and it still not work.

Funny thing is, I’ve known this for a long while. Nothing quite says, “It doesn’t matter what you do, I’m going to act however I feel like,” as much as having a completely unpredictable illness about which little is truly known. But I think this is the first time it’s really settled in, I suspect because of the constantly repeating trial and error I’ve gone through over the past nine months, in which things that should have conquered my treatment complications long ago, simply haven’t. And I think, if there’s anything to be gained from this situation, I appreciate the life lesson. I appreciate it being driven home that no matter what any doctor, family member, friend, or myself says, if I’m doing all I can and things don’t go the way they’re “supposed to”? That’s all right, because it’s not my fault. I can have all the knowledge in the world–and I put what I have to use every day–as well as all the tools to work with, and I still will not have complete control over how my body responds.

I can only thank God that I do know as much as I do, because without that knowledge, I’d be much worse off, and going downhill at a much quicker rate.

God, grant us the
Serenity to accept things we cannot change,
Courage to change the things we can, and the
Wisdom to know the difference
Patience for the things that take time
Appreciation for all that we have, and
Tolerance for those with different struggles
Freedom to live beyond the limitations of our past ways, the
Ability to feel your love for us and our love for each other and the
Strength to get up and try again even when we feel it is hopeless.

a rainbow at night

For a 2012 edition to this entry, see my newer post: Having determination does not always equal curing a disease.