Trying to cure myself Was all I knew how to do

Earlier this month I found out I had another new diagnosis, another piece to my chronic illness puzzle.
I found a doctor with experience in the area, and spent three weeks gathering the past 18 months of my medical records and filling out their extensive forms.
And this afternoon, I shredded all of it.

 

I found out I do, indeed, have the MTHFR gene mutation. Two of them, two copies of the C677T mutation, or MTHFR 677 TT, put another way (homozygous). This is not the worst case scenario, which would be one C677T and one A1298C mutation. What it does mean–as far as I can tell–is that while people with only one copy of the C677T mutation might have mild problems or generally do just fine, people with two copies are at a higher risk for the associated diseases. And it’s a reason why I cannot detox properly.

At the biological level, it means my body has trouble converting ordinary folic acid–a form of Folate/B9–into a form that I can use. And because properly converting folic acid to use, is what allows you to properly convert B12 to use, I have trouble there, too. (Or at least, I’m supposed to…) Because my genetic mutations cause my body to be less efficient, I don’t make enough methylfolate. You need methylfolate to use folic acid, and you also need methylfolate to use B12 (that is, to convert regular-cyanocobalamin-B12 from various sources, into the useable-methylcobalamin-B12).

 

Depending upon how much you randomly know, you may have noticed that says I cannot convert the forms of Folate and B12 that are in everything: Folic acid and Cyanocobalamin. They’re in everything because people are supposed to be able to convert them and use them. But I can’t do that very well, so if I consume things that have these, such as in vitamins or enriched foods, I am going to have a build-up of these unusable-to-me forms of vitamins, while never getting adequate amounts of the ones I can use.

This is why taking a multivitamins makes me sick. Even when I was taking my B-complex, I always had to chop them into pieces and only take them a few times per week to avoid sickness. Now, FINALLY, I know why this happens!!

All of this is supposed to mean I should have elevated levels of some things and low levels of various other things floating around because I can’t convert them properly… And these excess levels can cause all sorts of problems. But, according to my recent bloodwork–particularly the homocysteine–everything is within normal limits. It’s kind of astonishing, really.

To say I’m appreciative of my body finding ways around this, and making me crave food that would give me what I need, is an understatement. Go body, go! I will help you.

 

You know what medication makes this worse? Bactrim. This probably helps explain why my liver was fine until I needed Bactrim to finish killing off the bartonella infection. Should I need it again in the future, I will know to take milk thistle or something similar, to offset the effects, BEFORE my body gets too stressed…

And that’s pretty much how I’m going to approach this entire thing. I’m going to learn about it slowly and do what I can do offset the effects–symptom management, palliative care–and let my body continue doing what it can for as long as it can. I may do further research into mild supplementation, but mainly, my outlook is that this is another quirk I get the OPPORTUNITY to manage. Of course I reserve the right to change my mind at any time, but:

I am not going to go into “treatment mode.”

 

And it took several weeks of lamentation for me to really understand I had that choice, and that it wouldn’t be the same as suicide. As one person put it,

“The media constantly bangs on about how to live. . . They tell you how to preserve your body surgically and chemically so you look younger, slimmer, healthier. Why? Nature is perfect in herself. Every season is beautiful.

To be suicidal is to want to die and take actions to facilitate it. But I want to live. It just so happens that humans are subject to disease and death, and if I continue on the path which I have for the past almost-thirteen years, I will not be able to enjoy my life, the only one I have. I am going through a whirlwind of emotions with this, and if you think you’re able, you can take the ride with me.

I don’t think I’ve ever been so scared, or happy, in my entire life. To be continued

a rainbow at night

 

PostScript: I’ve been doing a lot of photography lately in honour of Jeremiah Katches‘ passing, so I’ll be posting some of my pictures at the bottom of my posts. This may be a temporary thing or ongoing (much like life, really), but here you go:

I have a hive? You’ve got to be kidding me.

How can the mycoplasma pneumonia still be alive?!

…Or at least, that was my first thought when this all-too-familiar hive popped up on my leg, in the same spot it always does when, what I’ve always suspected to be the mycoplasma, flares up.

It usually went something like:

Get hive on leg → Concurrent lung problems and coughing/sometimes pleurisy → ER visit or an otherwise-very-close-call

The hive part usually happens–from observing my own patterns and bloodwork–because of eosinophilia, associated with the mycoplasma infection. Bartonella (and whatever else I got from the fleas) causes it as well (so when I got them BOTH back in 2008, my eosinophils were really high)…but the bart should be gone, right? I didn’t get hives when I got re-infected with bartonella (and again, whatever else I got from those fleas) back in August 2011, so I’m thinking that leads further evidence toward hives being associated with mycoplasma.

You’d think it’d be dead by now after being on Rifampin a year, and Zithro for several simultaneous months with it, but since Mycoplasma is slow-replicating like Lyme disease (roughly replicating every three weeks, from what I’ve been able to find, and experience), I guess it makes sense that it’d take more along the lines of years to fully eradicate, just like Lyme disease. (Antibiotics, specifically the bacteriostatic ones, mainly kill when the bug replicates.)

Additionally, checking my tags, the last time I had a hive was right before I had to stop the Zithro because it stopped working for the bartonella. Right before that happened, I was beginning to get another severe flare-of-“unknown”-origin, with the proverbial-possibly-mycoplasma-hive warning sign before it started…

Then after switching from the Zithro to Bactrim (still with the Rifampin, to finish off the bartonella) I haven’t had a hive since.

Until now, that is. After starting the minocycline. Which also kills mycoplasma. More specifically, which also kills mycoplasma in the same way that Zithro kills mycoplasma. Hmmmmmmm.

So apparently this is a herx? And if I do get the impending very-bad-flare-up, I doubt it’ll result in an ER visit, since I’m not near as sick as I was before.

But still, this is disturbing, and.. I just wish the mycoplasma were dead!!

Time will tell what Mr. Hive has to say about my infectious status. Til then, I’m glad to be on minocycline…

Oh, also, I’m buying a shower chair. Yeah.

a rainbow at night

Mini-update on treating with Flagyl (and a painting).

Let’s see if I can suppress my urge to ramble and post the basics of what’s been happening. I shouldn’t need to go into too much detail because there’s not much more than this that I’ll need to know for future reference.

My insurance covered Tindamax up until January 2012…so they denied me coverage for it. Twice. I didn’t want to stir up trouble or questions, so I told my LLMD not to worry about appealing it again. I instead started on Flagyl. No big deal, right? I’ll just be on a less-effective, more toxic medication, for longer, because of no Tindamax. Regardless, it’s what I have to work with, now! The first week’s pulse brought out a burst of my neuropathy after each dosage, and worse neurological symptoms in general, such as a terrible ptosis of my left eye (it was the worst I’d ever seen it). After that, everything stopped, including my previous symptom progression, and now I actually feel worse on the days I’m not on it…! (This is the last thing I’d expect to feel while on Flagyl!!) But speaking of which…

My routine liver panel has revealed my enzymes are high. Now, they’re just a few points above the normal range. But when my usual, pre-antibiotic numbers (or pre-Bactrim, I should say, since that’s what made them start rising) are in the high teens, and now they’re in high forties and fifties, that’s triple what is normal for me. My LLMD is on vacation right now (which he really does deserve, but goodness, out of all times for me to need him!) so I can only imagine what he’d tell me to do. Which is take a two week break and get the enzymes within normal range before continuing. An LLNP online thought it’d also be a good idea to break. So I upped my Milk Thistle to three times a day and stopped everything but my vitamins, and hopefully within 2-3 weeks I’ll be able to start this Minocycline in concurrence with Flagyl.

My left sided twitching has been flaring the past week. It hasn’t gotten to full-blown-dystonia level, yet. I had my “three weeks of headaches” end, then a 4-5 day flare up with the Lyme flare, and I’ve since been fine, with no headachess for about a week. I can’t think of any other remarkable symptom stuff… Oh! But my heart functioning is the same as last time, says my echocardiogram from last week. :)

And last, but not least, my site (if you haven’t noticed) is now arainbowatnight.com! :D

  a rainbow at night