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

Almost finished with bartonella treatment!!

I used to post much more often than this, I know, but… Things are somewhat monotonous! I don’t have to constantly be on top of symptoms every five to seven days to post updates as regularly. Or at least I don’t think I do… Last month, around the 5th, and then the 10th, I had the same symptoms as this month, around the 5th, and then the 10th… I’m not sure what that’s about.

The past few weeks I’ve still been antsy over my random symptoms. Flu-like, fever (99.5 on the 6th–probable Lyme?), severe headaches, neckaches, dizziness, legs going very weak/requiring wheelchair, POTS, poor mental state. All very possible Lyme symptoms! But this is my last chance to make sure there’s no reliable pattern before we stop the bartonella treatment. These are possibly my last few days on Rifampin, after being on it a year! I also don’t think I’d be able to tolerate a maintenance dose of my Bactrim (i.e., two single-strength tablets per day) plus the Minocycline and Tindamax I think he’s switching me to this week… But! I am comforted by the fact that Minocycline has bacteriostatic action against bartonella (and mycoplasma), so even if there are some remnants, they won’t be able to replicate! :)

At any rate, Lyme is being.. interesting. I have not have a headache for about a week! Which is very ironic, because they’d otherwise become daily events! (Also ironic is I didn’t have a headache the last time I posted!) I just don’t get the bartonella-related headache anymore, the ones that hurt in the front of your head like a sinus headache might. I have about half of the symptoms I had at this time last month. The inflammation is way down so I haven’t needed any ibuprofen. Severe fatigue for several days, weak legs, numbness in my legs, episodes of arthritis, an internal tremor all day yesterday… What has surprised me with its reoccurence is the sensation of a bruise on the back of my left ankle, just like last month! It’s not an actual bruise, I don’t think, because it just spontaneously happened while I was lying down, and then I was limping the rest of the night. It makes no sense, but it’s obviously something Lyme related. It’s like achilles tendonitis that only lasts one night, haha.

I don’t have the results of my thyroid ultrasound yet but the technician said I only had like three little cysts??? That’s very good!

I leave you with a quote from Ralph Marston. :)

“Frustration comes from focusing on what you cannot control.
Achievement, on the other hand, comes from focusing on all the useful and valuable things you can do.

Resentment comes from seeing yourself as a victim.
Effectiveness comes from stepping up and taking responsibility.

If you constantly complain that life is unfair, you’ll blind yourself to the best opportunities.
Yet by simply accepting that what’s done is done, you’ll find a way to make the most of it.

Don’t waste your time arguing and fighting with life.
Instead, invest your time and resources in inspiring and encouraging the best in yourself and in those around you.

There is good, positive, fulfilling value to be lived every day, in any situation.
Choose to be the person who shines a light on that potential value and who brings that value fully to life.

Let go of the frustration, resentment and despair by letting the positive possibilities fill your awareness.
Embrace and enjoy the immense power that comes from taking full, unconditional responsibility for all you are and all you experience.”

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

Cardiologist appointment… Oh, and other things.

That day started with some relief–my menses had resumed. Which, honestly, I wouldn’t care if they never came back, but if they didn’t that would just mean more doctor visits to rule out things like cancer, and I’d rather not, thank you. I did set a new record, though, with how long they’ve disappeared at one time–nine weeks!

When I got there he started by asking how I was feeling since last time. I said “good” and he said I looked well. I was very pleased to show him I was out of the wheelchair.  Then the results came.

So, I still have the valve regurgitation. (I do not have mitral valve prolapse, just to be clear.) The primary issue is mitral regurgitation; I also have pulmonic and triscuspid regurgitation, but they’re always “trace to mild” and haven’t changed in two years. The other thing is that my heart function was decreased. He said it was at the lowest end of the spectrum to still be considered normal; my left ventricular function measured as “low normal.” I’ve always been over the base 55%, but this time it was at 55%, so he wants to watch it. I apparently have a new heart murmur in the mitral valve. (Perhaps this happened after the recent flea incident, during those three weeks I had chest pain and worsened symptoms of the regurgitation?) Oh, and I had wheezing in my lungs, no doubt the result of whatever caused me to be coughing those three weeks. By the time I got to the visit (on the 25th), my cough had stopped, though. He said I can expect a worsening of all this when going through things like infections and physical stressors.

He asked if I had any symptoms such as swelling in my feet or ankles, shortness of breath, fast heart beat, coughing, and frequent urination, specifically waking in the middle of the night to urinate. My answer was yes to everything; he didn’t mention that these are all symptoms of heart failure, but it’s me, and of course I know that. All of these things will happen if I’m not careful, but with my adapations I’m usually able to avoid them, which he suggested I continued doing. I told him about having a lot of trouble breathing when I lie down, which he noted, and said to come back sooner than our scheduled 6 month check up if it starts waking me up at night. He strangly also asked if I had nausea, so that must have some related thing, as well? I spontaneously get nausea for any number of reasons, but, doesn’t everyone?

Then we talked about my arrhythimias–they are there, but just didn’t occur very frequently! (If you recall, my symptoms had actually started to resolve by the time I wore the event moniter, ahaha.) Which makes more sense to me than the previous declaration of “it was just tachycardia.” He actually took the time to explain and show me the event monitor results sheet, and point out where the beats were messed up. Many times, the sheet said something to the effect of not being able to show the abnormality because of the heartbeat was too fast? How is that even possible? Anyway.

He just wants to monitor me, I guess to see at what rate things will progress. There’s not much that can really be done right now, besides what I already do. I take Co Q-10 daily, of course, and L-carnitine, for my muscles, so I hope things will delay themselves for as long as possible.

Now, what I didn’t mention to him, is that the hearts of people with M.E. have decreased cardiac output the day after exertion. It’s one of the few ways you can actually prove our disability: We are in heart failure the day after we exert. If I had thoroughly exhausted myself the day before the test, I could have SHOCKED this poor man with how much it could fail! But, I couldn’t mention it at the risk of him then disregarding the decrease and not wanting further followup, as I’m not about to just assume–as incredibly likely as it is–that’s all it was. I had a doctor visit the day before I did the echocardiogram. Hopefully that’s all it was, but. For the next test, should I rest up the day before to see how I fair on a “normal” day? Or let loose and allow people to actually SEE what my muscles do after exertion?

Other than that, I got the results of my bloodwork and yes, my eosinophils are indeed elevated again. But good news is, I haven’t had any more random hives or allergy symptoms, so hopefully they’re on the decrease now that I’ve got the Bactrim.  I’m also anemic again (hemolytic) which, coupled with the eosinophilia, is exactly what my bloodwork looked like when I got the fleabites the first time. So it makes sense, and hopefully things will even out. My cardiologist said at least there wasn’t a raging infection that would put me in imminent, immediate danger. My white cell count was good! In the 30s! It used to stay in the 20s for several years, but lately it’s been pretty stable, and that’s good. :)

I’ll explain why I was suddenly able to type all of this, in a new post! But basically: Bloodwork reflects hopefully-resolving infection, fleas did a number on me but I’m okay, and as usual, we’ll monitor my heart problems, which are minor as long as I stay within my limits.

a rainbow at night

Symptom updates, new theories, and doctors; oh, doctors.

The headache got even more severe the next day, on my peak mid-week-flare day. It was just barely responding to meds. Not using my eyes helped it ease, and when I awoke Thursday, it was completely gone.

When I got that rash in July, it appeared then started to fade out, and another cluster appeared. But so far, I haven’t had any more “papular eruptions” yet (as the Burrascano guidelines refer to these bartonella-related things). Every time I mention these rashes, people tell me I should get checked for Rocky Mountain Spotted Fever, but I don’t see what the point. It seems obvious and I will always wonder if I’ve some kind of rickketsial infection, whether that be RMSF or Ehrlichiosis or flea-borne spotted fever, or any number of things. I did have antibodies to somethign like that. The treatment for all of them is one of the tetracyclines along with Rifampin. If I still have these rashes despite adequate bartonella treatment, we’ll know it must be one of those. But as it is now I cannot handle Rifampin with Doxy, or Mino, or Tetracycline without risking hospitalization, even if I have come really far. One thing at a time, as they say! So any RMSF testing will have to wait.

But someone did direct me to a photogallery of bartonella rashes, via this doctor’s site, a man who studies them and writes about them. He was actually in the Lyme disease documentary, Under Our Skin. One of the pictures really struck a cord–it was exactly the same as the strange scratchmark-like rash I got on my knee several weeks ago, that I mentioned last post… So seeing that, I think I have enough random information to compile a new theory!

I THINK: The bartonella quintana strain appears to be smashed, evidenced by my non-existant five-day-flare cycle and all of its previously accompanying symptoms, particularly the “temporary insanity” (i.e., violent moodswings). But when that ended, this other seven-day thing began. And my rashes started coming back. And old symptoms popped up. And I almost went to the ER again. I’m not sure when, but I know I wrote of it in my blog somewhere, exactly when that new seven-day-flare cycle began. I’ve repeatedly hypothesized that this is the bartonella henselae strain coming out, but now I think I may actually be right.

  1. I finally got the scratch-mark like rash on my leg that everyone else gets,
  2. it has a seven-ish day flare cycle like I have,
  3. the dots on my feet are bartonella, according to numerous sources, including my doctor, and
  4. the symptoms are still bartonella-like, just at a different interval and with different dominant symptoms.

So either that has happened, or something that acts like all these things but isn’t bartonella (a “BLO,” or “bartonella-like organism,” as so many physicians refer to it?), is attacking me right now, and that’s the thing we’re trying to finish killing within the next three months.

Further research via moi has confirmed that bartonella really does cause the type of general, terrible joint pain I was getting. The good news is: It’s gone! I’m no longer aching or feeling like my bones are going to snap. I guess the Bactrim brought it out of my joints, and for that, I’m thankful. My knees still intermittently give me issues, but I still think that’s the Lyme disease.

I’ve been very fatigued lately. I’m unsure why. I get short of breath too easily, and get a headache when I stand up (not adequate blood/oxygen/pressure in my brain?). But I’ve stopped coughing all the time, finally. I’ve not had fevers, but last Thursday my temperature was 99.something in the morning, at my doctor’s visit. I’m randomly nauseated, multiple times a day lately, and from Tuesday-Thursday my left eye twitched all the time. According to my blog, I posted on the 10th of October that they had been twitching frequently also… I don’t remember that, but that’s why I keep this blog! Ha! I hope it’s a herx from the Bactrim and not a bug trying to show. They haven’t twitched since April-ish.

The only bits of troubling news is, one, my neurologist is leaving. Yes, the one I loved so much, that took me a decade to find, someone who actually would deal with my complicated case and take me seriously? Sigh. I scheduled one last appointment with him next month before he leaves. After that I’ll be seeing his colleague, who I hope is just as amazing as him.

And my cardiologist wouldn’t give me the results of my echocardiogram over the phone. You know what that usually means… I’m prepared for him to tell me my valve regurgitation is worse (wouldn’t surprise me) or maybe something to do with heart failue (also wouldn’t surprise me). If it’s anything else, I have no idea, but I’ll cross that bridge when I come to it, as the saying goes. :) I see him on Tuesday. This might be strange to say, or even stranger to read, but even if something is wrong, I still think I’m incredibly lucky. I’m alive, and given my particular circumstances and illness combination (and the fact that trees really, really love me), I think it’s a miracle that I am here every day, no matter what.

a rainbow at night

I think I’ve hit “the moment” in my treatment.

Yes, I have heard the news about the Whittemore Peterson Institute, but I don’t want to dampen my good news with such a topic, though it troubles me greatly. I will say, however, that I stand by Dr. Mikovits and anxiously await her new endeavors.

Secondly, it’s so.. conflicting.. for me to write of my good news in the wake of so many M.E. deaths. We’ve had five in just over a month? Maybe it’s the result of me being more in the community that I hear about it more? I’m not sure. :( But the death rate of 1 in 20 is beginning to sound like a myth, at this point.

Such is the reason why we cannot afford these petty arguments amongst the best researchers and institutions that we have on our side.

But my main reason to write is that… I AM FEELING SO MUCH BETTER. I expected things to have a good spell and then back down, as is common for us “Lymies,” but nope!

The Bactrim is treating me very well. I suspected it might, because it’s in the sulfa class and I respond well to those, for whatever reason, but this is truly remarkable. He wanted me on Bactrim DS (double strength), but as is usual for me, I could only tolerate the normal dose; taking one DS tablet put me in a state of being unable to move for four hours. Since when do antibiotic cause such drowsiness???

The herxing is mainly dizziness (which seems standard with any antibiotic I start), and I get anxiety after my night Rifampin dose like I used to a while back–it’s not severe enough to cause me to not take any of my medication, though. The seeming-optic-neuritis-thing went away after about a week, thankfully. I’ve been coughing  a lot more than usual, which is slightly troubling, and my eye twitches are happening more frequently? My mid-week flares (that are still falling from Tuesday-Thursday) are still present (headache, fatigue, dizziness, blood pressure problems, shin pain, mild fever) but not as severe, either! I had a light dotted rash on my feet the other day, but it was very faint. And the cardiac complications I’ve mentioned in previous posts, are gone! I guess it was just a herx from whatever bacteria had caused it to worsen? Or something? For all I know the Zithro may have been behind it…though it’s ironic timing that the symptoms got worse the same time the zithro apparently stopped being effective. (How depressing that azithromycin creates resistant bacteria so quickly!) Either way, those symptoms are gone. I see my cardiologist on Friday for my echo, and get my bloodwork done on Thursday to check my immune system, kidney, and liver function.

I have reason to believe my eosinophils might be elevated again: They do so whenever I either have to stop antibiotics prematurely, or when I get a new infection. Eosinophilia was actually one of the clinical clues that I had gotten something infectious, after contracting the bartonella and mycoplasma in 2008. One thing I don’t have an explanation for is that my menstrual cycle has vanished. Give me another week and I’d have skipped two months! And I’m definitely not pregnant! This is also something that happened when I got the 2008-bugs, so perhaps that, and the eosinophilia, etc., are all related, and things will even out when the bugs finish dying. :)

I”m definitely not getting worse, so I’m inclined to believe the antibiotics have been/are fighting whatever new infection I got from those new fleas! Yay!

The other day I went to Walmart, with no sunglasses, and no earplugs, and I walked on my own, with no cane nor wheelchair nor mobility scooter to help me. All right, I leaned on the shopping cart, but who doesn’t? It was a huge moment, and it shows me where I will be headed once we kill the rest of the bugs. I haven’t been able to stand up and shop for myself in over a year… I wouldn’t be able to last forever like that, but still, I was walking and standing in a supermarket for twenty minutes! That is huge!

Generally speaking (evening out the good days with bad days), if I were to rank myself on the ability scale now, I would say I am at 40% physical ability, 45% cognitive ability, and 50% symptom severity. Since my last checkpoint in May, that’s twice as good physically, 10% better cognitively, and 22% better symptom-wise! Also, if you look at the list I made then, I’ve gotten goals 1 and 2 out of the way, I’m working on doing 3 right now, and hopefully will be getting to 4-5 soon!

I’ll probably post next with my lab and echo results, etc., and who knows, maybe even more good news. To my dear readers, remember to be gentle with yourself; your body is doing the very best job it knows how.

a rainbow at night

Is this some form of optic neuritis? Also, lots of improvements!

My eyes hurt. My eyes hurt a lot, behind the sockets, but mostly when I move them… Well, try to move them, because I really can’t due to the pain, and specifically, it’s just my right eye. I’m also terribly photosensitive but that should be a given, right? (Sunglasses are your friend. So is the screen brightness adjustor on your computer.) I haven’t had this happened in months; it used to occur minorly as a bartonella symptom. But I don’t know WHAT this is, because it’s never been this severe nor lasted as long. It only responds to high doses of ibuprofen–not even entire Vicodin pills (I only ever need half at a time) give me any relief. This is the third day of it, and it’s starting to finally ease up. Yesterday the front of my skull also hurt, and now I have some type of headache in my neck, but that might be unrelated since the middle of the week is approaching (middle-week blues!). I’m very glad to be switching antibiotics!

I don’t get to say this often, so let me mention: Besides the at-times-excruciating eye pain, I have felt fabulous. We are finally in our new home and instead of being housebound I have been walking unassisted and moving boxes, and.. ha! Probably overdoing it a little, but I’m willing to pay the consequences this time. The only difference is I’m only on Rifampin because I had to stop the Zithro; unfortunately you can’t just take Rifampin because it creates bacteria resistance. This has only been for two days, to let the azithromycin clear out of my system because I had to start Bactrim today, and I didn’t want them to mess with my QT interval.

After some rescheduling confusion, I spoke with my LLMD this past Wednesday. Apparently his nurses had told him my results, and sent them to me, but he never got to look at them! This happened at his first office, too, when his staff said my Mycoplasma pneumoniae was negative and it wasn’t. (He needs new nurses.) But anyway! He confirmed that my bartonella result is positive. We’re not sure about the ehrlichiosis, as far a what my results showed before I got all the new flea bites; I get the idea he’s not too used to dealing with it though he knows that fleas are a big transmitter and how to treat it. He’s not certain what’s causing my flare-up every seven days, but suspects bartonella. He also said bartonella can cause the spots on my feet (I hope “that’s all” it is), and he’s not too concerned with retesting me because of me already being on the right treatments. I’m fine with that. He was unsure of whether it was my old infection was flaring, or the result of something I caught via those new fleas, but the conversation mainly became, what can we do to kill it now that it’s showing itself?

First I was going to start Cipro. But I have at least four contraindications: severe muscle weakness similar to myasthenia gravis (and I’m not completely certain I don’t have that, not until I get tested a second time this November to be sure), CNS lesions, chronically low or borderline potassium, and arrhythmia related to QT internal. So instead, we’re putting the Lyme treatment on hold for a few months and targetting the bartonella on its own, with Bactrim, to hopefully kick it out completely. So we’re dropping the Zithro, then in addition to the Rifampin I’ll also be on Bactrim. I took my first dose tonight and I feel okay, save the normal things. I hope I don’t herx too bad! The Lyme shouldn’t have enough time (just three replication cycles) to gain any momentum before I start something to start killing that, in January. That will be one year of bartonella treatment! From there I can hopefully just be on some type of maintenance dose?

Also, a current milestone is that this is the longest consecutive time I’ve stayed out of a hospital in three years! It’s been nine months since I last went! There were some close calls, especially two months ago, but I made it through and I’m setting a new record. ;)

AND EVEN MORE GOOD NEWS. I am now almost at the healthy weight I was before these infections relapsed roughly two years ago. I have gained seven more pounds, and have three more to go! This is not only great, but security, because if I ever do end up severely ill and lose weight, it won’t automatically be dangerous.

I think if the Bactrim dosen’t herx me too severely, I should be able to drive within another month. But we’ll see. ;D

Well, that’s all for now. I’m going to the theatre tomorrow!

a rainbow at night