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