No more minocycline and guilt over happiness.

The reason I have this blog is to keep track of my symptoms and occasionally share a ramble. I never imagined I’d be getting thousands of visitors… Thank you, for your views and your comments, and I sincerely hope the things I’ve written can help someone else. Many of you have shared that they have, and I will always feel blessed by it.

So yes, I need to update on a few things for future reference… The first one being: My brain fog. If I haven’t said it before, let me say it now: Flagyl gives me the worst brain fog ever. I’m glad I only take it four days a week. My typing has been fairly atrocious lately (sometimes worse than others) so I apologize in advance if this entry doesn’t come out right. I know some of you have to translate it into your native language and this one might not be.. erm.. see, I can’t even think of how to finish that statement! :\

My eyes have been hurting for weeks. I’m so sensitive to light, and I get stabbing pains in them. I’ve spent the past week in the dark. My nervous system has been very sensitive, in general, since I started treatment, however my eyes don’t usually hurt this much… I’m wondering if the Nasonex has anything to do with it. I’ve taken it for.. probably a decade, now? But I had a two year break, and I don’t recall it having an accompanying Glaucoma Warning in the past…? But it does, now. I’ve stopped needing it, so I stopped it two days ago. Today my eyes ARE better, but it’s impossible to draw any conclusions from that. It’s probably just coincidental timing and I’ll get a severe case of eye pain tonight like I did yesterday, aha. If in the future, however, I start Nasonex and get crazy eye symptoms, I’ll know something.

It would appear that warning-hive I got a few weeks ago held true to its title. On the 12th of May, I got very, very sick, and had to stop all antibiotics. Aside from the fact that I felt completely flu-ish with a severe headache, I’d gotten to the point that I could not eat anything, even drinking water was becoming difficult, and amassed in me shaking, becoming dehydrated, and needing Zofran three times a day to keep my nervous system from having a meltdown. These are the same things that the Doxycycline did to me last year before I was hospitalized for five days. We were worried that the minocycline might do this, too, which is why we’ve been easing into it for all these weeks… It’s clear now that I can no longer handle the tetracyclines. I’m just glad that (1) I knew what was about to happen so I stopped the medicine in time, and (2) that I basically had available to me the same medications that they gave me last year to pull me through it (except re-hydrating took a tad bit longer without an IV). After three “missed” doses of antibiotics I was able to eat a chicken sandwich, and it’s been a steady improvement since then…well, at least in regards to being able to eat and keep food in my system.

Wednesday I couldn’t breathe again, having much the same symptoms as two weeks prior. And I’m still having that problem: I cannot breathe when I sit up, but as long as I’m lying down, I’m pretty much okay, though I still have to gasp for air every so often.

Now, I’ve had flare-ups every two weeks for almost two years, now–since summer of 2010, I believe, when I took grapefruit seed extract (GSE) for a few weeks–so this isn’t too much of a shock. But I usually have Lyme symptoms during those flare ups. This time, I haven’t. At all. I’ve had lung pains, and coughing a lot, and an inability to breathe right. That can’t be Lyme disease?

The reason I assumed the GSE had woken up the Lyme disease when I took it, and gave me flares every two weeks instead of every four weeks, is because GSE is a supposed to be a destroyer of Lyme cysts (i.e., the cysts that the bugs were hiding in, open up and start causing symptoms, then you can kill them with antibiotics)… Well, I’m on Flagyl, which is THE cyst buster, so could that have anything to do with my minor Lyme symptoms during these flares? Or is this not Lyme disease at all, and is it Mycoplasma? My money is on the latter for this particular scenario, given the hive and the breathing problems and lung problems which are all the things that I was worried might happen. :\ Because I tell you, my other symptoms are very mild. Shockingly so. When I was off antibiotics this past week, my neuro symptoms barely even flared up! I’ve been having mild “hot foot” sensations in my right leg, and that’s about it. (My tags say I last had that.. well, let’s just say that every time I’ve mentioned it, I’m also talking about Mycoplasma… The evidence mounts!) Nothing went to attack my arms, nothing started quickly progressing like a starved animal waiting to pounce… That is very exciting, and makes me feel like we’ve at least done something the past four months. As I usually say, time will tell! I’ll keep updating on it, and hopefully a pattern will emerge.

Until then, we just make sure I’m on both Lyme and Mycoplasma antibiotics. So I started Biaxin today! I’ve heard great things about this one, and it treats borrelia burgdorferi and mycoplasma pneumoniae and even bartonella, in the event that some of those critters have survived and are saving up for a revolt. Also, the pills are bright orange!

Ah, and so far, I feel accomplished with my goal to not be advocacy-frenzied. I’ve reposted/retweeted a few things, but that’s about it. Life is good, despite everything. I’m happy, even though I feel like I have society and ten thousand other sources telling me I’m not allowed or shouldn’t be… I’m sick, I’m “supposed” to be complaining about everything, right? Ha. Last week I felt the urge to announce, “I’m so happy to be alive.” Because I was. Because I am. And afterward I felt so odd about it. One friend said, “You feel odd because society tells you to complain about your woes. You’re happy because you see what matters most.” Which is pretty dead-on. Another said that people see someone like me “who is thankful for another day and enjoys life as much as possible, and they make a hateful comment” because they’re trying every materialistic avenue available to them and still can’t feel happiness and appreciation.

I suppose when it comes down to it, I was worried someone would take it in the wrong way, or find a way to interpret it negatively, or think I was just “saying it to be saying it” even though I really do mean it. Also, I didn’t want it to sound conceited? I know people going through minor troubles who are very bothered day in and day out, and I have.. erm, well, a lot of daily troubles and suffering and yet lately I have maintained happiness. It’s just a fact. So I don’t want it to sound like I think I’m better than anyone, or something. Because I used to be bothered by daily insignificant things, too! I’m just so happy to not be that person anymore, to have inner joy no matter what, and I want to keep that balance between expressing that happiness about it, but not rubbing it in everyone’s faces. Then again, I only have so much control over how other people interpret what I say, especially when I know my heart is in the right place: Again, balance.

a rainbow at night

Article: Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi (Lyme disease)

Source.

Background: Lyme disease is a tick-borne illness caused by the spirochete Borrelia burgdorferi. Although antibiotic therapy is usually effective early in the disease, relapse may occur when administration of antibiotics is discontinued. Studies have suggested that resistance and recurrence of Lyme disease might be due to formation of different morphological forms of B. burgdorferi, namely round bodies (cysts) and biofilm-like colonies. Better understanding of the effect of antibiotics on all morphological forms of B. burgdorferi is therefore crucial to provide effective therapy for Lyme disease.

Methods:
Three morphological forms of B. burgdorferi (spirochetes, round bodies, and biofilm-like colonies) were generated using novel culture methods. Minimum inhibitory concentration and minimum bactericidal concentration of five antimicrobial agents (doxycycline, amoxicillin, tigecycline, metronidazole, and tinidazole) against spirochetal forms of B. burgdorferi were evaluated using the standard published microdilution technique. The susceptibility of spirochetal and round body forms to the antibiotics was then tested using fluorescent microscopy (BacLight™ viability staining) and dark field microscopy (direct cell counting), and these results were compared with the microdilution technique. Qualitative and quantitative effects of the antibiotics against biofilm-like colonies were assessed using fluorescent microscopy and dark field microscopy, respectively.

Results:
Doxycycline reduced spirochetal structures ~90% but increased the number of round body forms about twofold. Amoxicillin reduced spirochetal forms by ~85%–90% and round body forms by ~68%, while treatment with metronidazole led to reduction of spirochetal structures by ~90% and round body forms by ~80%. Tigecycline and tinidazole treatment reduced both spirochetal and round body forms by ~80%–90%. When quantitative effects on biofilm-like colonies were evaluated, the five antibiotics reduced formation of these colonies by only 30%–55%. In terms of qualitative effects, only tinidazole reduced viable organisms by ~90%. Following treatment with the other antibiotics, viable organisms were detected in 70%–85% of the biofilm-like colonies.

Conclusion: Antibiotics have varying effects on the different morphological forms of B. burgdorferi.

Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.

Read as (what all of us “Lymies” have already known for years): The bacteria change forms to evade the different classes of antibiotics. And none of the antibiotics they researched had any greater than a 55% success rate at eradicating the biofilm form of Lyme. Rifampin supposedly treats the cyst form, I wonder why they didn’t test that? (Granted, all of this was done in-vitro, and sometimes things react differently when in the human body.)

First off, I have to say this makes me feel very good about my LLMD suggesting that I go on Tindamax after the Rifampin! If the Rifampin is killing the round/cyst form right now, and this study shows that Tindamax (tinidazole) eliminated up to 90% of both forms of the Lyme bacteria… Goodness, I could be cured at that rate! (Well, unless they’re making biofilms… The jury is still out on how to completely get rid of those.) I’m also impressed that tinidazole kills even more than its close-cousin Flagyl/metronidazole (because we all know how well Flagyl works for neuroborreliosis), and (from what I’ve looked at) has less side effects…!

At first I was shocked about what was mentioned of Doxycycline actually increasing the round/cyst form of the Lyme bacteria, but when I remember that Doxycycline does not kill, it only stops the replication process, then it makes sense: If the bacteria cannot reproduce one way, they will just morph and produce in whatever way enables them to survive. This study actually……well, it actually proves that, doesn’t it? Yes.

I think this study was much-needed, and even a bit groundbreaking, if you ask me. But shhhh, “chronic Lyme doesn’t exist,” you know… Hahahaha!

a rainbow at night

[Edit: This makes more sense today, so I had to edit a few things. I got confused into thinking that the biofilm and cyst form were the same thing, but now I remember from the Under Our Skin documentary that the biofilms are those little clusters of spirochetes stuck together in that gel-like substance. You can go here to read further explanation.]

A neurologist visit, and autonomic neuropathy.

Monday was very stressful, for me and half of the country. There were storms and tornado scares. The only reason I’m mentioning is because the resulting relapse from the adrenaline surge of just barely having to run for safety has sent my body reeling. I definitely began paying the price for it yesterday… But at least there is still a house to pay the price in; some of the surrounding homes weren’t so lucky.

After my neurologist’s appointment I was sicker than sicker than sick. The dizziness has been incredible. My right eye began twitching, even, and I got a massive headache that persisted even after vicodin and ibuprofen.It’s been with me today as well, which must be something of significance because I can’t remember the last time my eye twitched.

My new neurologist is simply fabulous.

  • He listened to what I had to say.
  • He asked questions to better understand what I was getting at.
  • He did a full neurological exam (which I’ve NEVER had before, if you can believe it).
  • He didn’t tell me I was crazy or just over-reacting.
  • He didn’t scoff when I told him about the M.E. and the Lyme disease.
  • He was actually HELPFUL and offered me HELPFUL tests and rehabilitation.

Most importantly, he was able to take the time to explain to both my mother and myself what was probably going on. He didn’t get exhausted with me, and he’s going to be my primary neurologist! I see him again in four months. :)

I feel so great about going…even though I didn’t want to. I just figured, if three different doctors told me to see him, I should probably just take the “hint” and go. He said he gets a lot of the complicated cases, and surprisingly (or maybe not-so-surprisingly) a lot of his complicated cases get better on antibiotics than steroids. Hmmm…!

As far as what he found, he says I have some neuropathy in my limbs, and the reflexes in my legs were blunted. He was actually able to stand in front of me while doing the knee jerk reflex test. He also talked about cranial neuropathies, and said he can see the remnants of the Bell’s palsy in my face. He says he’s not sure if it will go away or not, but if I get out of this mess with “only” a crooked smile, I think that’d be fine with me.

Ah, and I didn’t prompt him at all, I swear, but I ultimatey asked him, what about the numbness episodes that are associated with my digestion? And he started talking about the vagus nerve and autonomic dysfunction. Insert me having to hold back my shock, here. He explained how the vagus nerve controls the things like heart rate and blood pressure and the digestive process, and.. all the other random things I’ve already mentioned here. And guess what, people. The vagus nerve is what initiates the swallowing reflex! And he thinks other cranial nerves are involved in this (my face and tongue going numb) because of my initial presentation with Bell’s palsy, signifying the infections are obviously attacking there…

So, basically? I have autonomic neuropathy. Everything that I thought was happening? It’s actually happening. The cause of these “episodes” I’ve been having really is dysautonomia. (I’m just neuropathic all over the place right now; he likened my nervous system to that of an infant’s, learning to grow and wire itself in the appropriate ways… I just hope it doesn’t MISwire.) The doxycycline really did initiate my the vagus nerve issues just like it did the first time, pushing me into that incredible herx where I couldn’t eat and couldn’t swallow and had a nervous system meltdown from it trying to kill the bacteria that have thoroughly engrossed themselves in my nerves… It’s really clear why everything else–my migraine triggers, response to caffeine–is just so hypersensitive right now.

He wanted me to have spinal tap done to see if the Lyme would show up. I told him how it doesn’t show up, and in fact is even less likely to show up there than in the blood, but he seemed to think it “should” show up anyway, and also wanted to see how much nervous system inflammation there was… But honestly, I don’t see a point in doing this invasive procedure, when it has only a 13% chance of showing Lyme disease, and my insurance can use that against me to deny me my medication. So, no lumbar puncture.

My B12 levels are fine–they tested me in the hospital. *sigh* I sort of wish they’d have been off–! But he’s testing me for a B1 deficiency because he said sometimes it can cause the same type of lesion on my brain. Ah, and about that, he said that at least it’s a stable lesion (i.e., not changing) and though he could easily blame my new problems on it, he doesn’t think it’s to blame because it’s been there since at least 2009.

In the end, he said to continue on my antibiotics because they were helping me, though he did hope I would’t have to be on them indefinitely, and he’s giving me a referral for neuropscyhiatic testing to better understnd what type of cognitive dysfunction I’m having. He didn’t want to do it in office because I seemed so alert, and basic testing (remember these three items in order…) wouldn’t have shown anything. Also, he wants me to try memory training to see if it will help… I’m not sure how that will work with having M.E., but I figure it can’t hurt? I mean, unless it does, then I’ll stop going, but it might be good to make sure my brain follows the right path in its healing. (It’s ironic, though, because as my treatment progresses, my cogniton will improve anyway? Ha.)

Tomorrow I see my cardiologist again, probably get this holter moniter off of me, and we’ll see when I’m to go to the rehabilitation clinic to analyze how my brain is functioning.

And there you have it!

a rainbow at night

Lower Rifampin dose, Migraine, still no caffeine

Sunday night I realized I couldn’t go through with the 600mg Rifampin. As I mentioned in my last entry, that day was very rough, and after my night dose, things only got worse. The herx reactions I was getting were severe, mentally and physically, and I felt I might take a bad turn, if it was that early in treatment and I was already feeling that horrible.

Monday I called my LLMD and he has now put me on 300mg, instead. Which I was taking the first week and handling all right… But I started getting that severely weak feeling again, like something was just wrong. So for now, 150mg twice a day, and hopefully in another month or two I’ll go back up to 600mg. It would be terrible if we tried to do too much too fast and ended me in the hospital yet again. My body can only take so much! I have the feeling being on Azithromycin along with the Rifampin is what made it unbearable, since it was adding Doxy to my Rifampin 600 dose that sent me over the edge last time. And Zithro works like Doxy does–prevents the bugs from replicating, including bartonella. More dying bugs, bigger herx, more strain on my system to keep up, more risk of hospitalization. If we can avoid that, we must.

Last night, right before bed, I introduced Splenda/sucralose in the form of three sugarfree cookies. That was a bad idea.

I awoke at 7am with a Migraine. I’m really against Treximet unless it’s serious (such as maybe another ocular migraine, or stroke-like symptoms) so I figured, why not see if my body is still reacting to caffeine in an abnormal way? I’ll have a cup of coffee like I used to when I got rid of Migraines. Another bad idea.

Let’s just say I’ve spent the majority of today in a feverish, tremoring, nauseated, irritable bowel-ridden fit of dysautonomia. And I haven’t even gotten to take my antibiotics yet! The caffeine woke up my digestive system far, far too much. And you know what that means: Let the nervous system dysfunction begin. I was going back and forth to the restroom (quite a perilous journey for someone with tachycardia) for frequent urination and “other” things, all the while experiencing the terrible symptoms I described last time this happened. I was scared I was going to dehydrate at the rate I was going, but I was able to get down a bottle of water (gradually) and a cup of hot soup once my bowels calmed themselves. I could have saved a lot of hassle by being able to take Zofran (ondansetron) but after getting a friend to check the interactions for me, he said that it interacted with my Zithro in that it could cause an inceased risk of arrhythmia by means of QT interval…the same mechanism that disallows me to take Diflucan. (I mean, sure, that would have been fairly decent “proof” while I’m wearing this holter moniter, but not at the risk of going into cardiac arrest!)

It’s safe to say caffeine is still on the “no” list, as is anything with sucralose in it. Lesson learned. I can only handle the meager amount of caffeine in my Fioricet tablets (which at the dose I take, is only about 10-20 mg).

a rainbow at night

I think this is confirmation.

All right! So we have the mystery of random limb numbness/limbs falling asleep most likely solved, and the mystery of the “episodes” just about solved… And this morning it happened again! So if that doesn’t confirm it, I don’ t know what does!

Took Rifampin. First my tongue began feeling strange (never any swelling), then the top of my right arm began going numb, then my hands and feet went cold and mildly numb, and the right side of my face was only half-responsive. As in, if I smiled and only exposed the right side of my face, you would only barely be able to tell. Went to the restroom… And everything died down. I find this absolutely remarkable! I suppose as long as I’m not on Doxy or having extreme herxes like I was this time last month, I can probably avoid the emergency room, since the “episodes” haven’t been that severe.

My Migraine numbers are down. I haven’t had a full blown one in.. huh, it might be a week, now. No more reactions to temperature/foods since being off the Doxycycline. I don’t think there is anything left that’s without some sort of explanation… I figured it would piece together eventually if I just rambled enough! Haha. Things are a little more comforting, because now that I have an idea about what’s causing things, I know what to do in order to avoid them, or at least, not make them worse.

Last night I had Truvia with strawberries…and did experience a lot more limb numbness, however, yesterday I also started the Rifampin twice a day, for the full 600mg, which also causes the numbness, so! The jury is still out on how much it affects me. I’ll figure it out eventually. Even after the first additional dose, I needed Lortab for the horrible headaches, so I’m glad we started slowly this time. Then after last night’s dose I had small surges of sudden anxiety and really terrible thoughts, but I was able to talk to friends until they passed. Yesterday may or may not have been a bartonella flare, anyway, so I guess it’s good timing that I was to up the dose then. My thoughts are still a little sporadic today. The dystonia is back.

Right now I’m struggling with the idea of going to three more doctors in the next two weeks. Infectious disease specialist –> Neurologist –> Primary physician –> Cardiologist –> Neurologist –> Immunologist –> Cardiologist –> Another neurologist

I am burnt out, and sick of wasting all of my energy and my insurance’s money on these people who do not help me. It’s taking all I have not to just cancel everything. I especially do not want to see this additonal neurologist but three people have referred me to him… I can’t figure out whether to check the “Chronic Fatigue Syndrome” and “Fibromyalgia” boxes on the applications they sent me to fill out for his visit. I had FM but do not have it now, and I never had “CFS” but yet was misdiagnosed with it and it’s on a lot of my old papers… The only conclusion I can come up with is to write down “was misdiagnosed with” and bring Dr. Byron Hyde’s book on M.E. and CFS in case he wants more explanations.

Blah.

a rainbow at night

Slowly but surely…

…I think the pieces are coming together. I had several “episodes” since I last posted, and.. let’s be clear, that by “episodes,” I mean the thing that happens when my face and tongue go numb, my arms (or arm) goes numb, I shake and temporarily cannot swallow, which may or may not be precipitated by an urge to urinate. I’ve had lots of different types of numbness over the past several weeks, so I felt a need to clarify.

I eliminated several other things that had any timing whatsoever to do with these attacks and/or my Migraines.

  • Ensure
  • BOOST High Protein shakes
  • things with Vinegar
  • things with nitrates
  • caffeine
  • black tea (even decaf)
  • coffee (even decaf)
  • Truvia
  • Splenda,
  • and Aspartame (which is the devil anyway).

Because anything and everything can give me a Migraine attack these days. I had something marinated in apple cider vinegar and my body had a general meltdown. I had green olives with half a protein shake and had another “episode” almost immediately, so I can’t tell which was the culprit. But, having done all this, I actually haven’t had a Migraine in two days. I can’t believe that’s an accomplishment, but… I’ve been getting them every day, otherwise. I even left the house yesterday, and didn’t get one! And in the mornings, I don’t have much numbness in my arms and face, but I can’t yet determine if it’s the absence of Truvia or just a well-timed symptom. I’m scared to find out the hard way, right now. The general battle is finding out what cluster of symptoms is the bartonella, what cluster has to do with my Migraines, and how do we prevent them both. One interesting thing though: It happened this morning, and I hadn’t any Truvia, or any.. anything! Which means it can’t be purely the Truvia, despite me having a decrease in overall numbness since ceasing it. (And there’s the kicker. None of this is purely anything, but it seems to be a lot of stuff happening wrong at the right time. Which is another characteristic of my Migraines: They don’t happen until a lot of triggers add up, and then just one more will push it over the edge.) Now, what affects me worse in the mornings? Bartonella. So, which is it? My conundrum should be apparent.

My LLMD put me back on Rifampin as of the 17th since I didn’t have anything crazy happen after a month and a half on it. Then, instead of adding Doxycycline, which is driving me out of my mind with its effects and herxing and messing with my throat/vague nerve, we’re adding the Zithro! I’m pleased to report I can handle all temperatures of food and drink and have no trouble with food texture. :D I’m on just 250mg, but considering this lowest dose still makes me feel like I have the flu every evening, I’m glad we’re starting so small. I’m still on a normal dosage of Rifampin and therefore we’re killing the bartonella at a reliable level, so that’s great news for me. I will still improve at a fairly decent rate, and can expect a change in ability levels within just a few months. I’m also lucky to not have developed any reaction to Rifampin, which can happen when you stop and have to start it again. It’s apparently still working as well, because the bartonella flare I had after I restarted it (which happened to be the next day) was insane. As in, curled up in a fetal position in a dark corner of my room, sobbing hysterically, not knowing what’s going on, or even how I got there, insane. So… We definitely have to kill them bugs. Kill them dead. (This goes in the category of “things I’d never admit did I not know they happened to most people with chronic bartonella.”)

The Topamax is amazing and I’m at the full 25mg right now. My Migraines… Well, I’ve had them a long time. So I can identify when they’re coming on, but lately they have been so complex, it’s ridiculous. Usually, my migraines affect the right side of my face, with numbness and pain and temporary facial unresponsiveness; my speech slurs and I cannot tolerate any sound or light. Bartonella attacks the right side of my face too, though. :\ This recent development where my arm goes numb and my tongue goes numb? It’s anyone guess whether that’s part of a Migraine or part of a bartonella flare or herx. (It’s sometimes accompanied by this “zap” sensation as well, which I’ve never felt as part of any Migraine.) But after searching LymeNet I found out that other people with bartonella are experiencing numb tongue accompanied by numb arms. How strange is that?! One thread even talked about the general numbness that’s been creeping up on me since I started the Rifampin! And on that note, twice after taking Rifampin this time around, I couldn’t feel my legs, and all of my limbs generally have that “fallen alseep” feeling at various parts of the day now. Especially at night, when I wake up and notice my limbs are cold and numb. (That’s a bit scary, but as long as the sensation returns, I can deal with it.) So! The mystery of the random arm numbness and terrible headaches that often precipitated them, may be solved! My severely increased Migraines may just be an unfortunate consequence of treating bartonella. What also falls into place, if this is true, is why all all of this gradually got worse throughout treatment, until I got on the Doxy and all hell broke loose. Hopefully being on Azithromycin will prevent such a severe cumulation of symptoms.

In general, the “episodes” and my migraines are getting less severe and less frequent. I still have trouble when I eat sometimes, however. (Things that HAVEN’T been happening, barely at all? No dystonia, no air hunger, and no troubles with low oxygen.) I will be sticking to this “Migraine diet” until I feel safe enough to come off of it. The Ensure drinks are once again off-limits, but that’s okay because my appetite is very healthy and I’m not losing weight! I’ve been gradually adding back my supplements and herbs as well, and I’m able to tolerate them again. I’ve actually been walking around more in the past few days than I have.. possibly since January, which is amazing. As long as I don’t overdo it, I think I’m finally at a stable point again. I’m not tired, so I’m having to force myself to rest and not do more than is necessary, which is.. well, it’s annoying. It’s like sitting a healthy person in front of an amusement park with unlimited tickets and telling them they can’t get up. :| But if I’m good now, in the future I shall be able to be active without dire consequences, so I must be patient. God’s given me the best opportunity for having rest, so I need to take advantage of it. On the scale right now I’d say I’m at, 20% physical, 30% cognitive, and still 7% symptom severity. The symptoms are definitely the worst part of this right now. They are still terrible and flare so easily. But I do have a lot more cognitive functioning so I can at least use my brain more. :)

Ah, and I saw my primary physician. I had to update her on everything that’s happened during the past three months. She says not to be too worried with the brain lesion unless it changes…which is good advice, right? It’s there, it’s done; it’s if it changes that will be cause for concern. She also wants me to see another cardiologist in case something else is contributing to the mitral regurgitation. Which is, again, sound advice. Just because I have things that affect my heart doesn’t mean nothing else can be going on. So for peace of mind, my mother is taking me to one Tuesday to get a bunch of tests run, just to make sure there’s nothing there we can potentially fix.

I’ve had the same doctor for ten years. She’s seen me from the moment I started going downhill, and through the M.E., and through the remission, and then through the relapse and these infections… So her advice means more to me than any other doctor. She briefly mentioned to me something that.. sort of startled me, in a strange way. She said something to the effect of, I know you’re at a race against time to treat these infections, but you know, even in cancer patients, if the chemo is going to end up killing them… Sometimes it’s wise to just let things take their course, if the treatment is going to be just as bad or worse than the disease, so I really hope you can get on something that will work, soon, because it pains me to see you continuously going downhill like this.

…Insert sad face here?

Hearing her say that just sort of drove everything home for me, I think. These past three weeks–goodness, nearly a month!–since ‘all of that’ happened, have just been one big blur and me taking it one hour to the next, to not upset the delicate balance that my body is struggling to maintain. Consciously I do realize what I’m up against, but there’s something about talking to your doctor for twenty minutes and having her sum it up all into that

It was never a surprise that things might get this bad. Even in my old journal from the past year, which I reorganized, I found where I’d written things like this:

December 5, 2009

“Two weeks ago I couldn’t make it down my hallway. Tonight I shuffled around in the yard, and made a snowman. No, I wasn’t exactly running around, but I was STANDING UP and doing so for more than two minutes…

I’m making this post now because if what I feel right now is any comparison, tomorrow is really going to suck. No one wanted to come out in the yard and make a snowman with me. They walked outside for a minute then watched from the door as I shuffled about, but… Hell, I have no idea what condition I’ll be in next time it snows, especially if that’s a year from now. I could be better, yes, I hope, but I could very well be bedbound yet again, or worse; anyone faces these risks for some reason or another, but that knowledge is always in my mind because of.. you know.”

I guess it’s sort of like when everything tumbled in July of 2010, and I ended up living with family again, barely having a spare moment to think because things had reached a new level of bad and it all happened so fast… It just happened again, I guess. And now I’m realizing it. (Granted, I’m back on my olive leaf extract, so I’m much more “aware” of everything again!) But somehow–and the media doesn’t help–you just imagine that with enough determination you won’t “let” yourself get this sick. Ahaha. Like it’s a choice…

a rainbow at night

Truvia: A piece of the puzzle?

As part of my quest to get to the bottom of my body’s general overactivity, I noticed something this morning: After I drink my hot beverage, my face and right arm begin to go slightly numb. Every morning. It’s not terrible or scary, but it’s noticeable. The only common factor besides that I woke up is… I use Truvia in my beverage, whether it’s decaf coffee or tea.

Again, why I’d randomly develop any reaction to it is beyond me, but I’ve developed a reaction to a lot of things lately that aren’t normal, so I can’t really bother with the “why.” I googled it and found out numbness is actually a symptom of long-term strevia and truvia use! So while my mother was buying my probiotics today I asked her to pick up a container of Xylitol, so I’ll start using that and see if, in the morning, I still have the face and arm thing. (There’s also the fact that it’s hot, and temperature has definitely been a trigger, but can one’s vagus nerve make their arm numb? One thing at a time, though!)

Even after the initial caffeine-reaction wore off, yesterday was terrible terrible terrible terrible terrible. The worst I’ve felt and not went to the hospital. I pulled through, and was so glad to see today! Success! ;) I ate dinner and my heart raced and my limbs went cold and numb; I was inexplicably thirsty; a couple hours later I got a Migraine for which I had to take Treximet; after that my heart rate dropped and was skipping several times per minute, for two hours; I was breathless but then again I’ve been breathless every night for two weeks (the anemia doesn’t help); after that I had to take my Topamax which made my heart rate jump up again (?!?) and then begin skipping and… Ugh.

100mg of Doxy today. Started back olive leaf extract. 100mg of Doxy tomorrow and Wednesday, then we’ll see if he wants me to stay on that, or perhaps he’ll switch me to a low dose Rifampin+Zithro combo. I’d almost prefer the latter, because I just don’t know if I can deal with the Doxy this time around. And it takes a lot for me to say that. It’s the best for me, but a couple of weeks on it and I….. At least the Rifampin I was able to handle and not crumble, and I like Zithro.

Today I’ve had weird tongue sensations and borderline-migraine sensations but no full migraine. Chest pains when I sat up too long, but at least I’m sitting up! I even walked a little, though I switch between having terrible parkinsonism or look like a drunken sailor. No “episodes,” but definitely some blood vessel constriction after I ate lunch…

I used to use caffeine to maintain adequate blood circulation after meals. My heart would race and fail to keep up with my falling blood pressure, so I’d have a cup of coffee and my heart rate would go back to normal. Two-thirds of your body’s blood supply goes to your intestines after eating. Since I can’t use caffeine anymore, I halfway wonder–as far as when my limbs go extremely cold and numb after meals–if that’s got something to do with it. Your body constricts blood flow to your extremities to preserve it for your essential organs, like your brain, if those organs are having trouble getting oxygen…so if you’re digesting, and 2/3s of that blood is already being diverted… See? I’m full of so much random information, I just wish I knew how it all fit together, ha!

I really can’t believe how sick I am right now. I can’t believe how volatile things are; I’m afraid to answer anyone when they ask how I am. I never know what any drink, food, pill, or moment in time is going to hold for me, even if it’s happened 1,000 times before, because everything sets off a different (but generally similar) chain reaction. My body is trying so hard to keep up.

I see my primary physician tomorrow to update her on all that’s happened since mid December.

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

Three ER visits, and a hospital stay: What happened.

In case anyone was wondering why I haven’t been around, it’s because I’ve been in the hospital. If you’re on my Facebook or Twitter then you already know this. I went to ER three times in less than 24 hours, so they eventually kept me. I was there from Sunday night (Feb 27th) to Friday (Mar 4th) from these “episodes” that acted like seizures, but weren’t. The antibiotics didn’t technically cause it, i.e. it wasn’t an adverse reaction, but the medicine killing the bacteria definitely woke something up, so everything entered into a sort of revolt and my body–particularly my nervous system–could not cope. I talked to my LLMD from the hospital, and he told me to stop all Rifampin and Doxy for two weeks, only using the Doxy to avoid another emergency room trip. (You cannot stop bartonella treatment “cold turkey” because THAT can land you in the hospital, as it has for me in the past.)

My body has been fighting a lot of things these past two weeks. In addition to what I already had, my labs suggested an unidentified virus lurking, for which I can do nothing right now; I’m anemic because of the infections that I can’t treat; my blood sugar has been high (because of stress reaction I think);  and I haven’t been absorbing proper nutrition OR essential vitamins, yet I’ve also been unable to handle my nutritional shakes, so it seems inevitable that I will lose more weight. When everything else went south, my liver decided it couldn’t deal with my antibiotics, either. However my body also cannot cope withOUT the antibiotics either, since bartonella comes back with a fierce vengence in a very small amount of time, so I may very likely end up in the hospital this weekend if things take a wrong turn. All I can do is pulse the Doxy on Saturday and Sunday, and hope for the best. I’ve officially run into a treatment failure, despite us being so careful to avoid it. I’ve been very, very ill and unable to handle ANY of my medicine, even my herbs. Things got.. pretty bad.

You know, I really should be more specific in my prayers. Like, instead of asking to “make it to Saturday” without an ER visit, I probably should have extended that to the whole weekend! Because leave it to me to feel in the clear on Saturday, and then end up in the hospital on Sunday!

I guess it all started Saturday evening/night, February 26th. I watched a lot of TV, including two movies without pause, which doesn’t sound like much, but for someone with M.E., watching four-five hours of straight television and actually paying attention? That’s a lot of energy. Too bad it doesn’t affect me then and there. It was fun, and worth it, but I should have rested after that. I didn’t.

So the next day a lot of bad things came together:

  1. The relapse from the previous night began hitting me.
  2. Doxycycline takes 10 days to build up to its highest levels in your nervous system, and it was day ten.
  3. I had a small argument with my mother which stressed me out further and I am not supposed to get stressed out.
  4. I overexerted further: I just wanted to lie down in the living room and watch two movies with my family… I didn’t think it’d get me as sick as it did.

So by 7pm Sunday, I was sick as a dog (why do people say that?), herxing severely, having a Migraine, and I guess my nervous system just.. had enough. I had been having severe tremors all day, but then my muscles began spasming and going numb interchangeably. I went to my mother’s room for safety. She looked at me and immediately started making a list of my current medications for the hospital staff. (Mother-premonition?) I then proceeded to have this seizure-like episode of my limbs going numb, my tongue going numb, an inability to swallow (though I could breathe all right), and uncontrollable convulsions. My stomach felt this “rising” sensation and my speech was slurred whenever I did try to talk. This happened three times between Sunday night and Monday evening, so by the third ambulance trip, and me failing the Pronator Drift test (a neuro test, indicating a upper motor neuron lesion) they kept me.

“It” proceeded to happen again that night, twice on Tuesday, and once on Wednesday. I was discharged from the hospital Friday morning (4th) and I had a minor attack that evening. Then another minor attack on Monday, and one on Tuesday (the 8th). They were getting less severe and.. more Migraine-like than seizure-like, but then I had another bad attack two days ago on Wednesday, complete with a few minutes of convulsions. :\ But for the most part, instead of full-on convulsions I get some muscle twitching, and the “main event” is now a tingling sensation in my stomach and chest, abrupt numbness of my arms, neck, face, jaw, tongue, all mostly on the right side, and sudden slurred speech. (I still suspect some nerve around there is really messed up, perhaps that vagus nerve that has been giving me so much trouble recently.)

There are some very odd happenings that make it nearly impossible to find the true cause. I’m not sure there is just one, really. The first time it happened after drinking an Ensure; the second after taking Rifampin; the third after eating a hamburger; the fourth after eating again; the fifth after an Ensure; the sixth-thru-whatever numbers were correlated with either Ensure drinks or Migraines. In fact I’ve had a Migraine on.. Sunday (Feb 27th), Tuesday, Thursday, Tuesday (Mar 8th), and yesterday. Also, during the first three episodes, I really, really had to pee before it happened. Like, an abnormal amount, but I wasn’t drinking that much, so it didn’t make any sense. Nothing makes any sense, besides my nervous system just went into some type of overload/failure. I’m sure the exertion worsened it, as did the antibiotics/herxing, and for a time I developed the same sensitivity to Ensure as I have to daily multivitamins. I cannot take vitamins because they cause this unusual, terrible reaction where I become in a paralytic-like state for about 8 hours. And because of the number of times this happened shortly after drinking an Ensure–even though I’ve been drinking them for weeks and it helped me stop losing weight–it looks like I’m having a similar reaction to the nutrition in them, after a certain point. But why it happened after I ate? I have no idea. And why did I have to pee so badly before them? What the hell?

I’ve had intermittent arm numbness since I started antibiotics, which I’ve mentioned on here repeatedly. (And oddly enough, it was in conjuction or following severe headaches, remember? They didn’t seem like Migraines at the time, but now, I wonder…) So the antibiotics woke something up, I guess. And I also mentioned here, I’ve had increasing trouble swallowing for the past four weeks, which made it impossible to eat a lot of things. It cumulated into a full inability to initiate swallowing last Tuesday, and it was pretty scary for a while. I didn’t want to end up with a feeding tube. :( Other things of possible note are my more frequent arrhythmias and tachycardia, which annoyingly never happened during any of the three times they checked my heart rhythms! But they did run a LOT of tests of me, over twenty-five. Included was an EEG, and the results would insinuate I’m not having seizures, but the sad part is, you can still have seizures and have a normal test result. :\ So. Yeah. They ultimately found:

  • I have a rotated kidney! This has been present since birth and poses me no problem.
  • I now have moderate mitral regurgitation in my heart.
  • A spot on my brain, which made me very, very angry.

Because I’ve had three MRIs in the past two years. Three MRIs. I’ve had this lesion in my brain during the last THREE scans of my brain, and no one said anything about it! It wasn’t on my 2003 MRI, but it’s been there since at least 2009, and has gotten “minimally more prominent.” I got Lyme in 2006, and both Bartonella and Mycoplasma in 2008 (when my neuro symptoms really took off) so my best assumption is, they did it.

But speaking of brains, they had me see a shrink to make sure I wasn’t just causing these problems out of anxiety. And I can’t really blame them–my doctor mainly wanted to make sure anxiety wasn’t worsening my problems–because truly my symptoms were very anxiety-like; if I didn’t know me, I would have made the same assumption. But as you can imagine, the results of that were, “She’s sane,” which is the SECOND time I’ve had to see a psychologist to prove to my doctors I’m not just a stressed out female… So maybe now they’ll leave that alone?! An interesting fact, though: The psychologist knew what Rifampin was because he has two other patients who have been off and on antibiotics for Lyme and coinfections. You know, in this state where I live, where Lyme supposedly doesn’t exist? Just like the two patients my infectious disease doctor treated here? Yeah…

The area of my brain with the lesion is the Pons, which is part of the Brain Stem. All of your brain is important but that.. is.. very important. It’s the part that allows communication between the your brain and spinal cord, i.e., any signal your body gets or receives has to pass through it. Wiki says the Pons is about 2.5cm in length, so the fact that this “spot” I have is 1cm itself… A little frightening, that. It could have been caused by a particularly bad Migraine, but.. then why is it getting any bigger at all? Or if it’s demyelination caused by an infection, it’ll just be there forever. If it’s actually a Lyme cyst, it could disappear with antibiotic treatment, because it’s not nerve damage as much as it is a bundle of bacteria that appears as a lesion on an MRI. The worse case scenario is that these infections have triggered multiple sclerosis (MS), which Lyme, Bartonella, and Mycoplasma pneumoniae are all capable of doing. And truth be told, the spot is more MS-like than Lyme-like. But. That scenario seems less likely, because MS doesn’t improve on antibiotics; I did.

As for the valve regurgitation… Well, I guess I expected as much. MVR generally gets worse over time, so it’s a little scary that it went from mild to moderate in just a year and a half, but… I guess when you look at what’s currently happening, and also with me being unable to treat the bartonella for almost a year (bartonella really likes the heart), it’s not that shocking. As if having M.E. wasn’t enough of a predisposition to heart failure, this does not help.

I’ve been working on this entry since Tuesday, so maybe in another few days (hopefully sooner!) I’ll try to make a post about what’s happening now. Until then, wish me luck with my antibiotic pulse, that it’s enough to keep me from the ER! I’m sure they’re very sick of me by now!

a rainbow at night

[Note, Nov 17, 2011: Further developments as to what happened can be found in subsequent posts, or by clicking the "pings" (posts where I referenced this one) below. These attacks were eventually proven to be neuropathy of my vagus nerve.]

A Friday update

I think it’s safe to assume I will not be taking any ambulance rides this month…!

I’ve been insanely thirsty today, which is a lot better than needing hydration and electrolytes and yet not getting the signals, I must say.

Also today I’ve been very arrhythmic, which is.. not exactly unusual, but an observation that I’m having it more. I’m unsure if it’s because of electrolyte imbalance or just what else is going on. A few hours after last night’s post the tachycardia went away, and today it hasn’t been high or low. Just.. not quite synched, as far as beats go. The first time I was on antibiotics I had endocarditis from the bartonella (and survived, ha!), and the resulting herxes were very severe. This is no where near that bad, so I’m thankful.

Doxycycline takes 10 days, at 100mg twice a day, to build up a constant level in your CNS. Just 100mg doesn’t do much, so starting from when I began the 200mg, this was day eight… Yay!

Everything from my shins down is very sore and weak, in a painful way. The ends of my arms have a similar thing happening but I can still type so it’s not that awful. Light fever. I’m slightly dissociated, a little moody (but not too bad), and seeing things out of my peripheral vision. Several hours today I became very weak, almost to the point of being unable to take adequate breaths; I thought that might be the point when things took their “turn” but I eventually came out of it, and here I am. :)

I am relieved.

 

a rainbow at night