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