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

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. Wow! 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 cruising around 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 $2,000 (making my part about $400), and would signify the need for something more.. permanent, than a transport 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 my medical team cannot find a way to stabilize 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, that 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–wonderful for the small size of my house–and I can propel it about with my legs as long as I don’t go too far. (Trust me, the irony of this is not lost on me.)

So I came home and purchased it.

Remember that random bump on my lip? The one for which I took around 1200% Vitamin C? The candidiasis has improved since I decided to continue it. 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 (seemingly two weeks for me lately?), but bartonella replicates every five days, so it’s actually the bartonella that has me worsening so quickly. (I don’t know if replicate is the right word to use, but that’s when it floods your bloodstream and travels about.) 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. These coinfections are the real trouble, if you ask me.

Hmm… Another 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, so that’s typical. 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 mother cook potatoes seemed like forty minutes, when it was only ten. The one-hour drive to one of my doctors 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 can really say about it. (In hindsight, this was probably related to the migraine pre/postdrome).

The worst moment of this three-day venture from Wednesday to Friday (so many doctors!), happened on Thursday evening. The 24-hour delayed symptom flare from Wednesday evening was beginning, made all the 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, enduring shallow breathing and inadequate blood flow, she 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 M.E. 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 help. What struck me was when she 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 that’s what he had to do for her every night “close to the end” due to her inadequate blood flow. I laughed nervously to hide my discomfort.

a rainbow at night

Vanishing Bumps, Endocrinologists, and the Strength of my Dad

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