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

Well THIS wasn’t supposed to happen so soon.

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

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

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

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

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

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

a rainbow at night

Letting go of society’s expectations, symptom recaps, and improvement with bartonella.

Despite the fact that my brain has been functioning a lot better recently, I haven’t much felt like updating. Completely the opposite of several weeks back, when I couldn’t think to save my soul but desperately had things to say! I’m learning a new language, so most of my spare brain energy has been going into that. It will also help me decide if I may be able to attempt finishing my degree come next August. If I cannot, however, I think I’d be okay with just letting it go. Afterall, I do have at least one degree–even if it’s not what I set out for–and my health is too precious to waste on going to university to finish a degree I may never be able to use, and which may worsen me trying to complete.
I have fought too hard to get to this point, and I don’t want what society says I should be doing to dictate what would actually be best for me. If I do reach the point where I am finally stable, then I would love to try and finish and become a researcher, or at the very least, a counselor. But that would take a lot of trust in the fact that I’d still be stable and healthy enough to actually do those things after my degree was finished. If I never again become that well, wouldn’t it be better to attempt some type of small job with the degree I already have, than use up everything I’ve gained in pursuit of something that won’t do me any good? But even that would require more health than making sure I don’t starve on my own. If I only improve enough to take care of my basic needs, I will be thankful.

Illness has taught me my worth is not defined by how much money I make, or what level of degree I have, or what job I have (if any, if ever). I am worthy because I am here, because I exist.

Randomly: I’ve gotten several followers the past few weeks from all over the world–oh, the power of the internet is amazing!

Okay, let’s see. From the 16th-23rd I was having a typical Lyme flare… How is it possible that this pattern hasn’t changed, practically since the time I got it? Is it really THAT predictable? But yes, severe headache and neuropathy issues, and I also recall being more cognitively impaired during then, as well as thirsty–again, all typical. What’s not-so-typical is that I’ve had nasal allergies the past week. I can’t tell if it’s eosinophilia related (hopefully not) or something I’m exposed to in my environment. It’s not like I go outside or even open the windows lately, with it being so cold, but either way, since I’m not allergic to anything except chamomile, this is puzzling! I’m definitely reacting to something–I just don’t know if it’s internal or external. I have Astelin, until I figure out what’s going on.

I felt it’d be okay to restart my stretching routine a couple weeks ago, so every other day I get some exercise! No relapse, yet. I’ve been able to cook a lot lately, also, which is encouraging. It’s still difficult and frustrating because of my muscles and their tendency to fail the day after using them, but hopefully that will improve more soon. If it got worse when I got these infections, surely it will improve as I continue to treat them.

Dare I say that the bartonella eradication is going as planned? The Bactrim is amazing, and I think the bart is.. well, it might be gone, or at least, finally beat into submission?! The protocol is to continue treatment two months past the cessation of symptoms, and I talk to my Lyme specialist next month, so we’ll see what he says. Then I can start Tindamax to finally treat the Lyme! The antibiotics I’m on now treat it, but only very minorly–just enough to keep it from taking over. I’ll be stopping the Rifampin since I can’t take it with Tindamax, but I may stay on a maintanence dose of the Bactrim, since bartonella has a crazy-high rate of relapse, and I do not want to go through this again. I feel I’m probably being unrealistic that I should never face it again, with the way my immune system is, but… For now I’d really like to enjoy my improvement.

Three days ago I started my Zoloft to ward off PMDD and control any outstanding OCD symptoms. I don’t think I was having PMDD yet, but since I was supposed to have taken it again in September, it’s bound to show up soon. My OCD has been flaring and I’ve been hungry all the time, so I know some brain chemicals were out of alignment. I last took it in June, I think, and it was by far too late then!

The past three weeks I’ve had this odd collection of symptoms that fit the description of pelvic floor dysfunction–not saying I have that, but symptom wise, that’s what’s going on. All of my muscles there would randomly tense and were very uncoordinated, no doubt the result of nervous system disruption. :\ I have gotten this on and off over the years, for a day or two at a time, but never three weeks. It’s mostly gone away now. My menses started two days ago so they’re somewhat on schedule again, with every 45 days being my usual. However, if things continue to be.. bizarre, I may see myself going to yet another doctor, so it’s worth keeping track of, yes? I’ve been slightly anemic even before this, and yesterday I had the most random craving for crushed ice (a further sign), so it’s probably no wonder I have been beyond exhausted and out of breath with every move I make. (Anyone else start singing The Police just then? No? Okay.)

A recent study found a correlation between high doses of Vitamin C and a reduction in the rate/increase of heart failure symptoms. Granted it’s just a correlation, but now I feel even greater about taking two tablets per day since last year!

Til next time

a rainbow at night

Aha!

Welcome, June!

Well, one of two things has happened. Either I’m feeling better because I’m exiting one of these random three-week-cycles, or I’m feeling better because forgetting my Vitamin C and lemon water really was the reason I was feeling so much worse, and herxing worse!

My symptom severity is down, my fatigue level is down–I have “normal” moments, where I can stand and walk uninhibited, even!–and my headaches aren’t as bothersome (though ibuprofen remains my best friend on earth right now).

Short post, but important! This is also the beginning of the month, when my previous 2nd-Lyme-flare cycles have been gradually going away, so we’ll see what happens this time…!

a rainbow at night

So my neck is better…

…I still get spells of head and neck pain, but I can look down and my eyes are mostly all right. I stretched today! I’m still limbo-ing, but not as severely. For the most part, I’m very fatigued, but I have moments where I’m okay. I just wish they lasted longer, like they had been? But in general, I’m no longer spending the entire day in bed as I have been for most of the past week, so I’m not so.. anxious isn’t the word I’m looking for, but. Whatever you call it when you have a progressive disease and the treatments appear to have halted improvement.

I did realize two things. First, I’ve been forgetting my Vitamin C supplements! Now, I get enough Vitamin C in my diet, no doubt. But something about the extra gram or two per day, really helps me. I remember back in December when I began taking it, it made me feel better immediately. So forgetting it for what has probably been two weeks may be playing a part in my recent energy problems. (They’re large chewables and don’t fit in my pill organizer, is the only reason I’ve been missing them!)

Secondly, I’ve also been forgetting to detox, period. Now, I don’t mean crazy-internet-fad detox, but just something daily to help my liver along with all of these dying bacteria (your body just isn’t meant to deal with all of this over long periods of time; herxing is proof of that), particularly so I don’t get sicker. For me it’s as simple as coffee and lemon juice… But I haven’t been drinking coffee as often the past two weeks, because I have to buy a special kind of decaf that is about $15 a small bag, to avoid migraines. So as of yesterday I began the lemon juice thing. My LLMD instructed me last year to drink lemon/lime juice (in water, of course) daily, but… I simply forgot! I make it a “soda” and drink with my first meal of the day. :)

  • 2 tablespoons lemon juice
  • 1 tablespoon lime juice
  • Xylitol or Truvia to desired sweetness
  • sparkling water (I mix half regular water with it)

So, with the combination of extra Vitamin C and the lemon juice, I hope this will help my body get over its slump. Nothing good can come from forgetting two things you’re supposed to be taking daily, so I imagine that only good can come from remembering them.

Sometime this week I need to go get my liver enzymes checked, speaking of which. And this week or next I have an appointment with my LLMD to discuss how treatment is going and see what testing I should have from IGeneX… That is, if their office hasn’t floated away in the massive floods.

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 have wonderful news to report!

Today I got the results of my yeast culture, and it shows that there is indeed no more candida overgrowth! First, a moment of joy: YAAAY!!! This means that I can restart my antibiotic therapy, finally. I have an appointment with my LLMD next Wednesday. And then an explanation:

We initially were getting the yeast culture to prove that it was still there, not that it was gone. Because after the Sporanox I still had remnants and still required Nystatin for its maintenance, which was unbelievable. But as I stated in this entry, after being on high-dose Vitamin C for a week (and probably the fact that Sporanox continues working for a few days after you stop it; I should think that had something to do with it, too), by the time I got to the doctor to get the culture, there wasn’t anything left to culture! So instead of waiting for the results to prove it was there, I’ve been waiting on them to prove that it wasn’t. And it wasn’t! So this confirms that I can resume antibiotics without worrying about a candida problem!

I’m sure this will be very confusing to the doctors who were waiting for this to confirm the presence of yeast that I’ve complained about for the past year. It was admittedly a very awkward time to have improvement, and I’m a little peeved that I didn’t get the culture done earlier to prove to them that I wasn’t just making it up, or whatnot. (Having misunderstood illnesses such as these means you get accused of that more often than one should.) But I figure if they want to know the full story about why it ultimately came back negative for candida growth (if I have to see any of them again, that is), I’ll just have to explain what happened. Then I imagine they’d be happy for me, too, once they know. But I bet my primary physician is going “What the heck?” at the results! Because on the day we did the swab, I was too ill to be bothered with speaking anything not medically-necessary, which meant no energy to explain how the Vitamin C was helping so much… So she’s sort-of in the dark about all of this. Ah, well. I’ll see her soon enough!

 

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

Transport chairs, Vitamin C, and herbs.

Let’s see. Significant health-related things that have happened the past few days…

My primary physician said I could have whatever mobility aid I needed, to just go to the medical supply store and pick something out. The only problem was, what would benefit me the most–a transport wheelchair–is NOT covered by my insurance because they’re not a self-propelled item.  (Which doesn’t make much sense to me, really. If I’m too sick to push it myself, you’d think that be a major part of why they WOULD cover it?)  There was some minor debate between my family and I about why I didn’t want an electric wheelchair, which, for clarification, is usually what you see children with muscular dystrophy in, since their disease also means they cannot use their muscles to propel a manual wheelchair. First off, I didn’t want it because it’s too large, too heavy, wouldn’t fit in my car, and would take up a lot of space in my room, but most importantly, it costs $2k (which would make my part about $400) and signifies the need for something more.. permanent, than a wheelchair.

I realize that this is a major step, one that could potentially signify my inability to return to a pre-wheelchair bound state if we cannot find a way to stabalize me. But I don’t think that justifies having my insurance pay for an electric wheelchair or scooter, when there’s still a chance I may not need it for more then the next several months. I’m not hopeless yet, you know? There’s still a chance that we can get this under control, and I can resume antibiotic therapy, and as a result won’t be quite so sick. If I progress further and need an electric wheelchair or scooter, then fine, but let me give this a try, first. In the store, they had the one I was going to buy online set out, so I got to try it out for size and usefulness. It turns on a dime, which is wonderful for the small size of my family’s house (well, I guess “my house” too, now). And I can push it about with my legs–as far as my room/bathroom goes–which will be fine as long as I don’t overdo it. (Which is.. fairly easily to do, recently, but…) So I came home and purchased it.

Remember that random bump on my lip? The one for which I took around 1200% Vitamin C? My yeast problems have improved since I decided to continuing that. I can brush my tongue normally in the morning, without needing the Nystatin. My digestion is more normal, also without taking Nystatin. And things are becoming more normal in the lower regions, as well. I don’t think it’s any coincidence, and high dose Vitamin C is a good regimen for just about everything I have going on… That random bump that caused me to take so much of it, could have been a blessing in disguise. I’m about about 1.5 grams daiy right now, and I do plan to continue it and see what happens.

Normally I’d be really happy about this, and in general I am, but… Again, it helped, so when my doctor had to get a culture sample from me, to confirm the presence of the candida yeasts… Well, now I’m concerned that because things were better, it might not show up! Ha! How’s that for irony. Either way, I can’t resume antibiotics until the results are back, roughly about 6 weeks from now. :( But because I won’t be doing any more tests or things, what I CAN resume, are my herbals! So with much, much glee, I have added back my olive leaf extract, oregano oil (only for five days), and houttuynia! The latter is for the treatment of bartonellosis, so I’m a little nervous about that herxing. I don’t think any of these treat Lyme, but after five days with the oregano oil I can switch to grapefruit seed extract. Lyme replicates roughly every four weeks (or two weeks for me lately), but bartonella replicates every five days, so it’s actually the bartonella that has me worsening so quickly. That’s not including any possible babesiosis, which I pray I don’t have, but it has a replication of 4-6 days as well. The things that hang on to you because of the Lyme (whether you got them from the same tick or not), or because of underlying immune dysfunction, are the real trouble, if you ask me.

Um. I had a migraine on Friday. Just for the record. I’ve also started to get more frequent headaches, mostly in the front of my skull. I went a few weeks without needing pain meds every other day, so I wonder what randomly made them start happening again? But as far as other typical-bart symptoms are concerned, my shins have been hurting for two weeks, and I now experience foot pain every other day. And yesterday when I woke up, my temperature was ALREADY 99 degrees; it later went back down in the doctor’s office, to 98.5 degrees. Today my temperature was a brief 99.5 but I’m not sure of its significance, because I didn’t get my rising temp and this is right before my menses. The dystonia has NOT been severe in a while, but with the addition of my herbs I expect it to flare up a bit: We shall see.

As for me mentally: I. have. no. sense. of. time. But it’s not like my usual timelessness, where things seem unusually fast, or I blank out, or like before, where I forget entire days. Lately it’s been–and I’ve been doing this over and over and over for the past week–that things seem to take a disproportionately long amount of time. Watching my mum cook potatoes seemed like forty minutes, when it was only ten. The one-hour drive to one of my doctors literally felt like it was longer than the five hour drive to my LLMD. And a bunch of other things where my family has had to tell me, “No, you’re just doing ‘that thing’ again.” Everything feels like it takes forever, and I’m not sure why this is. That’s all I really have to say about it.

The worst moment of this three-day venture from Wednesday to Friday (so many doctors!), happened on Thursday evening. Wednesday’s evening’s activity was cumulating in its 24-hour delayed crash, and made worse by Thursday’s twelve-vial-bloodloss. I wandered to my mother’s room and collapsed in her bed, as I am wont to do when I don’t want to be alone because of feeling particularly awful. I haven’t had an episode of my breathing muscles being affected by the weakness in a long time, but it happened that night. Specifics aside, this ultimately resulted in cyanosis of my extremities (please note that I do not have Raynaud’s syndrome). Being mostly unable to move from shallow breathing and inadequate blood flow, mum massaged my hands and feet until I returned to a natural, oxygenated pink. Why I said “no” to her fetching my oxygen machine is beyond me, because I really could have used it: The fact that this sometimes affects the muscles in my chest is one of the reasons I have it! Nonetheless, I continued to make a slow recovery with rest and mum’s help. What struck me was when Mum brought up my sister, whom I talked about last post. She mentioned being glad that my dad wasn’t around to see her rubbing my hands and feet, because it’s what he had to do for her every night “close to the end” because of her blood flow. I laughed nervously.

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