It feels like I’m talking about someone else’s life, sometimes…

So, in my last post, I said I’d give myself another two weeks off treatment and then re-evaluate my state of health to see whether or not I should restart treatment for Lyme disease. Something happened to help me make that decision.

I got an ear infection. Just a minor bacterial one which I get about once a year if I’m not already on antibiotics at the time. (Well, at least compared to a VIRAL ear infection, they’re minor.) I’m a miniature pharmacy so I already had the Z-pack needed to treat it.

I took one pill (and you’re supposed to take two at first, but I didn’t think that’d be smart for me…I was right) and spent that night feeling unimaginably ill while trying not to have a mental breakdown.

Fellow Lymies already know this, but: Zithro is the cousin of the medication I’ve been on (Biaxin) to treat Lyme disease, and also a potent treatment option in itself, so taking it affected a lot more than just trying to help my ear. There was fever, chills, constant shaking, dizziness, numbness, nausea, and a host of other things, like not being able to remember my best friend’s name (?!?!). But the real “kicker” was that I felt that way from just one pill

After being off meds for a month and a half, I can’t even handle one pill. :|

I can only handle half-a-pill, which is less than a child’s dose, and I can only hope it will be enough to cure my ear infection… But it’s definitely not enough to treat my disease. If anything, these tiny half-doses may keep things from progressing too quickly, but will also make me a target for drug-resistant bacteria, and then talk about being in a mess…!

This does take away the choice (mostly) of whether to begin treatment again or not, because it’s obvious I physically cannot do it, and mentally, I am still so, so tired.

Toward the middle of November, I thought I was doing better. I left the house three times in a week, and (not the same days, but) I had three consecutive days with no pain. So I thought I was getting over the relapse, until this happened. I was just a little crushed… But it is what it is, right?

I’m not sure what’s going to happen from here. My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. (And the Lyme disease is stage 3, meaning it’s.. everywhere. And it does not wait for you to be able to handle antibiotics.) But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.

If not, well… C’est la vie, que sera sera, and all that jazz.

 

I stopped doing the ability scale checkpoints because they are a reminder of how I haven’t made much progress since finishing bartonella treatment. Now, I don’t want to make that sound mediocre… If that disease was still present, I wouldn’t even have the luxury of wondering whether or not handling treatment was an option; I’d just be dying very quickly again!

But the truth is still that I kept waiting for a stable period to make an assessment, and that has yet to happen. I repeatedly had to pause treatment, take such-and-such different medication, take this-and-that medication to balance out the first one, then relapse, recovery, relapse again, and whatever progress I did make, I just kept going downhill again.

I made my last checkpoint at the beginning of this year and I can honestly say I am still at that place, in general, with the obvious adjustment that my symptoms are more severe for the time being due to relapse. But at least I am not any worse than that. I like being able to breathe and walk on most my days. And I do think I am a bit recovered from this relapse that began at the beginning of October.

I can handle longer periods of light, I can be out of bed more, and I have longer stretches with less pain. The translation of that is: I can usually use technology for several hours a day instead of bursts of twenty-minutes until I couldn’t bear it anymore; I make it out of my room several times a day instead of barely once, and sometimes I can leave the house; and my “usual” needed dose of pain medication is once a day, instead of always twice a day…and I have random days where I don’t need any at all. So,

  1. without intervention of medicines like caffeine (which is the only thing that enables me to do things like take a bath, or have a stable blood pressure), or pain medications (which are the only reason I can be active at all); and
  2. with 100% being completely recovered,

I am currently at 15% physical ability and 20% cognitive ability. As we all know, there are better days and worse days, but in general…

And with 100% completely symptom-free, I am at 10% symptom severity. Though I think the chart should be in reverse for that section, because initially “10% symptom severity” sounds as if I only have symptoms 10% of the time, and it’s the exact opposite:

“Moderate to severe symptoms (6–8) at rest. There is moderate to severe pain (6–8) and/or sensations of illness/dysfunction throughout the body and brain for much of the day. Symptoms are severe (8) following any physical or mental activity with a recovery period as low as hours, or as long as days to months, or longer. It is all the person can do to just get through one day at a time.”

 

Thankfully I do have medications to help me get through this difficult time, and all the support in the world from my friends, fellow spoonies, and doctors, about whatever decision I have to make. (My family unfortunately has no idea of the magnitude of this… Right now, I’m not sure I’d want them to know, until I can give them an idea of what we’re looking at…) And I have an appointment with a pain management specialist next week, and I see my Lyme disease specialist on the twelfth. So this is where I am at!

a rainbow at night

(P.S. – Today is my 2-year WordPress Anniversary!! I never imagined so many people would be helped by the words I share. Thank you, all. Stay strong with me!!)

I’m listening to the crickets chirp.

It’s one of my favourite things to do at night when it’s very quiet. Perhaps because it reminds me of the peace I had at my own home. I would listen to them every night as I fell asleep, the frogs and the crickets, and every morning I’d be awakened by birds chirping outside my window… Now I get that here, too. It’s one of the perks of summer. :)

 

The past week I decided to take a break from social media, Facebook and Twitter and the like. I still updated a little, but I couldn’t keep up with everyone else. I needed a social break. Also lately, in my social frenzy (I like people and interaction, I really do–don’t let the sick-person thing fool you), I realized I was starting to backslide into giving my very precious energy to people who don’t return that concern. It’s something with which I’ve struggled to maintain balance for years. I suppose, because for a small time I was able to be more social than usual, it caught me by surprise when that was no longer the case. I was reminded just where my energy was going–into relationships that were otherwise a one-way street, just me conversing with people who, for the most part, wouldn’t even bother to check on me if I suddenly disappeared. So I needed to back up and regroup, gather my thoughts and focus on what (and who) is important. It all helped.

And I made two great accomplishments this past week!

 

First, I walked inside a supermarket to do my grocery shopping and did not need any mobility assistance! Secondly, I ate a salad without the autonomic neuropathy screwing over its digestion and causing me severe pain later!

I’ve made several milestones this past year, as far as leaving the house. My first trip into an outside building using only my cane instead of being in my wheelchair–just standing up for those few minutes was amazing. My first minor trip inside a real store without needing a mobility scooter to do my shopping (though still earplugs, and sunglasses)–standing up on my own for more than a few minutes, amazing still. Now I’ve done my own grocery shopping, walking around completely on my own, for what must have been half an hour, with only earplugs. Another step in the right direction. :)

I wasn’t able to drive, or stand in the checkout lane, or put up any groceries, but I’m sure that will come later. The following three days (or, the past three days, I should say) have been spent recovering from that excursion. One with M.E. recovers by doing absolutely nothing. I was fortunate to not have too much of a neurological overload (probably because Lyme & co. are being beaten down?) so I was able to watch DVDs to pass much of the time. I went into rest-mode immediately after we returned, but the main start of the crash occurred roughly 24 hours later, very predictably with my legs. I took extra Co Q-10, and L-carnitine, and magnesium, and made sure I got enough protein, and maintained adequate hydration. After a decade with this disease I’m pretty used to coping with what inevitably occurs after so much activity: the muscle relapse and inability to be upright, from an overworked heart muscle and damaged mitochondria. Without all my supplemental intervention I would definitely NOT be at all functional, yet. But I’ve learned a few tricks or two! ;)

As for the salad, well… I love raw vegetables almost more than cooked ones, and I love fresh salads. But for the past several months, while my nerves have been trying to heal with the help of these antibiotics, I could not eat any raw vegetables (or anything high in fiber, for that matter) lest it trigger a neuropathic “episode” of my digestion basically.. stopping. My body would start to digest and then just.. stop. It’s incredibly painful, and something I’ve dealt with sporadically since first starting treatment to kill these infections, but which progressed pretty far before any substantial bug-eradication could be done. I’m not sure what the exact specific name for it is (I’m assuming something along the lines of gastroparesis, yes?) but it lasts for hours and I have to break out the caffeine to jump-start my nervous system and get things digesting my food again. :\ (Silly vagus nerve, either causing things to do too much or too little.) Needless to say I’ve been avoiding that horrible scenario… Until today. I thought enough time had passed to at least attempt some veggies. So I ate a salad…and everything went as normal! It was amazing. I’m hoping I can get back to my usual pre-neuropathic diet, or at least incorporate more of the things I truly enjoy eating.

 

As far as peripheral neuropathy goes: Much better! I can wear normal clothes again, for instance. And as far as the asthma flare up: My cough is now gone completely. :) My eyes have also been better, hence me being able to watch DVDs a lot. However, I did have a headache flare up last weekend, probably because I always get a flare up (Lyme or Mycoplasma, it’s anyone’s guess at this point) around the start of the month. I also had several days worth of migraine attacks (with horrendous postdrome) because I didn’t realize soon enough that something I was eating repeatedly had sucralose/Splenda in it. Erm… Some number of days ago I had a hive again. Any nick or cut I acquire refuses to clot for a long time, but with being on ibuprofen 2-3 times a day for the past two months, I guess that’s to be expected. My inflammation must be in a down phase, because I only have to take one ibuprofen per day right now. :) Probably because of the more-advanced anti-inflammatory (corticosteroid) I’ve had to take in the form of Dulera… Oh, and the urinaylsis came back normal, but we expected that much, right?

One thing I do wish I could start is my Zoloft, because my OCD is borderline raging recently, from so many months not taking anything for it. I am on so many prescriptions right now that I cannot bear the thought of adding something else. I have never been on so many prescriptions at once in my life! I’m trying to keep in mind that this is just a temporary thing, to help get me through this phase of treatment…

That’s all for now. It was nice to summarize my improvements for a change. :)

 

a rainbow at night

First post of 2012! (Some pictures, a painting, and a recap.)

Your 2011 year in blogging

A New York City subway train holds 1,200 people. This blog was viewed about 7,300 times in 2011. If it were a NYC subway train, it would take about 6 trips to carry that many people.

In 2011, there were 99 new posts, growing the total archive of this blog to 123 posts. There were 37 pictures uploaded, taking up a total of 6mb. That’s about 3 pictures per month.

The busiest day of the year was December 29th with 83 views. The most popular post that day was How I Forgave the Doctors That Called Me Crazy.

Well thank you, everyone! I’ve recently begun getting a lot of hits on my black bean brownie recipe, too? Who would have thought!

I hope 2012 will be a productive year. In just a few weeks I’d have completed my bartonella treatment, hopefully. More on that once I actually get there, but I haven’t–to my knowledge–had any reliable exacerbations every five days. ;) My LLMD was impressed, and said one more month of treatment, to be sure.

Okay, so I’ve managed to post about life lessons, recipes, and articles lately, without any mention of how I’m actually doing… So symptom charting, right! I had a mini-flare (???) around the 16-23rd of December but it wasn’t too severe–the main symptom was excruitiating fatigue. For the past five days (about) I’ve had lots of what appear to be Lyme symptoms. This is pretty typical since I often have a Lyme flare up at the beginning of the month. The “fire foot”/”hot foot” sensation, in my left leg. The “dragging left leg” thing, yesterday. Numbness in my left leg, and today in my hands. Facial nerve disturbance (pictures I take of myself during this scare me a little!). Severe cognitive dysfunction. Joint pain, nasty headaches (but none today!), worse fatigue, minor palpitations, internal tremor, eyes going every-which-way, seeing things, temperature of 99.5, complete lack of appetite, needing ibuprofen every evening. I stopped having headaches for I think a week…then they were back. The past week I’ve also found several bruises–one on my ankle, one on my shin, one on the back of my arm, and another on the back of my elbow on the other arm. One actually appeared on a day I know I didn’t hit anything, so I’m assuming them to be sporadic. Anemia-related? It took me about a week to recover from Christmas, but it went very well–I took lots of rest breaks!

Randomly, my new favourite thing to put my lemon juice in, is pineapple juice. Three ounces of pineapple juice (natural, not concentrate!), 1 or 2 tablespoons of lemon juice, and three ounces of sparkling water–detoxing never tasted so wonderful!

Also randomly: I’ve developed a new migraine trigger of…cheetos. Yes, cheetos. Apparently fake “cheese flavoring” is not something my brain likes. Nor is the sucralose (splenda) I found in my antacids, of all places!

Since my last ability scale checkpoint in October (which was right after I started Bactrim, but before the Lyme had a chance to hit me again) I have gone back down a bit. In general, I was thinking last week that.. as much as I hate to admit it, I think I’ve overestimated myself on the ability scales, out of genuine forgetfulness of what it’s like to be healthy. I have been ill for a length of time that begets forgetfulness about what normal people, with their non-diseased bodies and mitochondria, are capable of…
I remember enough to know that I could go go go all day then sleep it off and be fine; that I could lift things all day and just be sore from it, not experience muscle paralysis; that I could think about a tedious problem (technology or math) and not get physically ill from the mental exertion; and that I could keep things in my short-term memory for more than a few seconds. But for the most part, I forget that my level of improvement is completely relative, and that my 40% or 50% is completely different than someone else’s. Perhaps those who read my blog and happen to be less ill, or those who are healthy, don’t realize that, either. It might really become a problem if I were to tell someone in charge of determinig my disability status what level I think I’m at, because 50% recovered to me, just means being able to take care of myself and my basic needs!
None the less, since my last checkpoint, I am for now at: 15% physical ability, 15% cognitive ability, and 40% symptom severity. I’ll reiterate that bad days are worse, and good days are.. well, better/higher up on the scale. For instance, today I was up a lot more, and New Year’s Eve was also a better day in which I stood up a lot and didn’t need much assistance. But in general, this is where I am. I need caffeine to take all my baths, and even then they are often an immense task, but I’m just so glad I still have those options!

I’d like to end this with some pictures I took on a day when I was bedbound, as well as one I took when I wasn’t! Afterward, a painting I did a couple of weeks ago, when my days were horrible but, for some reason, I felt better for an hour or two each night (probably from resting all day).

Clicking them will obviously enlarge them in the gallery, then if you want to read more about a particular picture (or comment), click on “permalink” and it will take you to the individual description page. Happy New Year, my fellow spoonies!

a rainbow at night

Migraines and caffeine and surprises, oh.. yes!

I’m pushing it by typing this, but I just can’t help it. I will rest extra tomorrow to make up for it.

I’m excited. There are flowers in my room and I’ve realized they make me very, very happy. Today while lying in bed, I looked around and just admired how incredibly gorgeous my surrounding are, and allowed myself to feel gratitude for it. This is what I wanted, after all–a place to feel peaceful. The weather was wonderful and I looked out of my open window.

That headache I got the other day was a migraine. It kept going away and coming back, so it had me confused, and it didn’t respond to Treximet, which had me more confused. But today, not wanting to take another Treximet because of how awful they make me feel–numbness and dizziness and generally an awakening of all those weird symptoms I get during my autonomic neuropathy “episodes”–I chose to take a risk. I’ve been able to handle some caffeine for a while now, and recently I’ve pushed the boundaries further with no ill results. So I took an Excedrin Migraine, the one thing I’ve used to control my migraines for the past thirteen years. Some may or may not remember the insane reaction I developed to caffeine, but today, nothing happened. Oh, except my migraine going away, that is! I didn’t get any of those dreaded symptoms! I feel I am finally free and healed of whatever occured in my body/brain that made caffeine such a trigger for the past nine months. And I am elated!

Caffeine is a drug, and one that helps me do far more than just stay awake. I can stay awake on my own. But now I can use it to stand up in the mornings, earlier than the two hours I usually need to avoid passing out. Now I can use it to help me digest food if I begin experiencing post-prandial hypotension. Now I can use it to get rid of my migraines. Now I can use it to help my brain in general! I mean, look at me, typing these entries!

But I am not going to start taking it everyday. Nor am I going to allow it to mask my symptoms so that I overexert, which is dangerous. I’ll probably mess up a few times–not being used to differentiating, after not using it for so long–but that’s all right. I will figure it out!

With that in mind, I shall close this entry, but I wanted to post about this wonderful news. :)

 

a rainbow at night

(P.S. – Oh! And I have a surprise for December!)

A monumental moment!

Well, the beginning-of-the-month flare might be vanishing, but perhaps it’s not completely gone yet.

For the past two day (prior to today), I was having that left-sided “fire foot” sensation. I imagine people with peripheral neuropathy will know what I’m talking about. It’s as if you’ve momentarily stuck your foot into a fire, hence, “fire foot.” It usually occurs during my Lyme flares, but I’ve heard a lot about it concerning bartonella, which has an affinity for the feet, so I’m not positive. Also, my brain fog for the past.. I’ll say four days (again, prior to today) has been ridiculous. I’m usually ten times better cognitively, while on my olive leaf extract, but not even that has been able to save me from whatever’s been happening. The main event of today has been more peripheral neuropathy, but of my left arm and hand, to where the skin feels raw; even the sensation of water was painful. So highly uncomfortable, but I’d like to think it’s happening because the bugs are being killed there. And that’s about all. Some “leftovers,” if you will, but this is still a great step up. I can’t wait to see what doesn’t happen by June! :)

Neuro status: I’m still seeing things, but not as much. My face still tries to slant to the left every now and then. I’m still struggling with dystonia and parkinsonism, but it’s no where near as severe as it’s been in the past. I now only have an action-oriented tremor instead of a constant tremor. I’m still having autonomic neuropathy with my vagus nerve, but it’s so much improved I only notice during a larger-than-normal meal.

So, on Tuesday we went to Walmart. It took everything I had to get out of the house. My supplements, Ubiquinol, a good prayer, some meditation, and Vicodin. (I can’t have caffeine, if you’ll remember.) But I did it! Then Yesterday I “payed for” it with a crash. Then today, after a whole bunch of rest (and ubiquinol) to help the crash, I was mostly recovered! (I cannot, cannot, cannot stress enough the value of Ubiquinol or Co Q-10 during this. I just can’t. If you’re reading this blog and you have M.E., or even if you have Lyme, you need to be on this supplement. It is worth every dear penny.) So today, being recovered, we had a few more places to tackle. Post office. Dog medicine. Dog food. I got out at two of the places, with just my cane!!!

It’s the first time I’ve been in a store (or any building) without my wheelchair, since last year.

I’m slowly but surely accomplishing my little to-do list! This morning I even brushed my teeth and washed my face, while standing up! *waits for the resounding gasps*

Oh, treatment is working.

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

Another development: Is this the answer?

Okay. So we’ve figured out that other people going through bartonella treatment experience limbs that fall asleep and general messed up blood flow. Many even experience the same tingling tongue + numb arms that I get, though sans Migraine.

But something happened the other day that makes me think I’ve come across an epiphany as far as what is ultimately causing these “episodes.” They might seriously be some sort of dysautonomia attack.

It was in the “morning” (or at least, my version of it) and I hadn’t taken anything, not food nor medicine; only water. My body began digesting and wiggling around inside, you know, general bowel movement (BM) organization. Then, all of a sudden, “it” started: The right side of my face began to go numb, my tongue felt weird, and my right arm began to get cold and numb like it’s been doing. So nature called and I had the BM, and then.. everything went away!

I was stunned.

I’m no stranger to my body reacting abnormally to digestion. As I mentioned previously, sometimes when I have to digest, my POTS symptoms get much worse because of the diverted blood flow. (There really isn’t a predictable pattern to it, but eating large meals or meals that require more work are a trigger.) My body just doesn’t know how to correctly compensate for the changes, in the same way that it can’t correctly compensate for my changes in position. There’s not enough blood for the rest of me, my blood pressure plummets, and my heart rate climbs trying to keep things normal…but it can’t, so I cannot sit up or I risk passing out. Often my limbs will run cold from the lack of proper circulation. Caffeine has always helped me cope with this, I assume by getting the blood where it needs to be more efficiently; whatever mechanisms work to do this, I’m not exactly sure, but it’s nothing to do with hormones or chemical levels (adrenals), at least that much has been studied. (Do a quick search on “postprandial hypotension,” “autonomic failure,” and “caffeine” and you’ll get some interesting results…even from the 1980s!)

But… What else does caffeine do? Well, for some people, it makes them have a BM! For right now, this MIGHT explain why I cannot tolerate much caffeine without everything going awry. It seems I can tolerate a little caffeine again, because I’ve needed it in my Fioricet tablets. But I’m scared to try much else right now. It would also explain the second time I ended up in the ER because of these “episodes,” even though that morning I’d done nothing but take my Rifampin: For whatever reason, Rifampin always creates a BM about two hours after I take it. A lot of the “episodes” were also precipitated by a sudden urge to urinate an abnormal amount of liquid; I don’t know what that means, but it could definitely be related to dysautonomia as well, and I know several of the “episodes” I felt things digesting but without the need “to go.”

The dysautonomia theory would ALSO explain why these episodes seem to be correlated with my eating in general, and not correlated with WHAT I eat, but just that I eat. It’s not the food, it’s what my body does in reaction TO the food!

This morning, for example, I had only taken my olive leaf extract, and I started getting a small “episode.” My stomach began moving about, and a BM later, the symptoms went away. Then I took my Rifampin. The usual herx reactions, but also the beginnings of numbness and a tingly tongue. Again, another BM because of the medicine, and the symptoms went away again!!!

Now, I seriously, seriously think–with good reason!–that the increasing dysautonomia problems and blood flood difficulties I’ve been having since I started treating the bartonella, may be directly to blame for the “episodes,” and my increasing Migraines, because migraines are the result of problems with nerve conduction and altered blood flow. What is the main factor in my dysautonomia? Problems with nerve conduction and altered blood flow.

Oh, and GUESS WHAT ELSE is controlled by the autonomic nervous system?

Swallowing!

So even why I sporadically cannot swallow during these “episodes” would make perfect sense!

With all the spasming my circulatory system has been through today, I’m in this “pre-migraine” state that I’ve been in more often than not. It’s.. constriction of the blood vessels in the right side of my head, and it’s painful, but I can still function. It’s not a full blown Migraine, but if I gave it another trigger (like I had previously been doing with the various foods and things, like vinegar), I think it would turn into one.

So it’s all coming together, I think! I’m not saying everything is explained by just one factor, but all of them together? All of this mess–the bartonella, the migraines, the dysautonomia, the Rifampin, the Doxycycline–they are/were all collaborating, and my nervous system is just fried. But since I’m not the only person to have this happen while treating bartonella, I feel better about it.

I’ve noticed my own blog comes up when I’m searching for things, and that quite a few people have ended up here while searching for dysautonomia…

  • dysautonomia and numbness in face
  • rifampin postural orthostatic tachycardia syndrome
  • rifampin made my pots worse
  • post infection dysautonomia
  • dysautonomia lyme disease
  • need to compress legs for dysautonomia
  • nausea dysautonomia

So if this is happening to you, please know, you are not alone! And even if it feels like an anxiety attack–because the one I had this morning almost did–you are NOT doing this to yourself! Staying calm will definitely help, but ultimately, you’re not to blame if your nervous system can no longer control its most basic of functions.

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.

Dysautonomia attack?

My symptoms get weirder and weirder. I had an episode just now but not my usual episode… Something similar, though.

Once again it started with me having to urinate. My legs and arms began to shake for some reason, as if from weakness. Soon after lying back down, my arms began to go numb along the distal edges. They started getting very cold, and eventually I could not feel them. All of my limbs then began to get cold in general, and yet my hands and feet were sweating. I had to urinate again urgently. Afterward my legs went numb as well. My extremities had the consistency of lead and I had limited use of them; ever tried to use a limb that had “fallen asleep”? (My temp is 98.9.) My face was mildly numb but this wasn’t the usual “face and arms and back and tongue numbness” that’s been happening. My stomach began to have this odd sensation in it, but it wasn’t severe; my heart was not beating fast, but beating strong and skipping mildly. The shakes began to go away, replaced with a mild tremor that someone might expect from hypoglycemia. I had to urinate again. Eventually everything died down. The edges of my arms are still numb and my face is a little weird but everything else is decent enough.

Does this or does this not sound exactly like an anxiety attack? For reference, yes, it does. But you don’t get an anxiety attack lying down drinking coffee, or listening to music, or about to fall asleep. This time I really do understand why my doctors think I’m just anxious. This doesn’t make any sense. If I didn’t know me, I’d think I just needed some Zoloft, too.

Now, strangely enough, dysautonomia can explain all of this. If you’re even passing by this blog then you probably know that dysautonomia is basically where.. the parts of your brain that tell your body how to react to the simplest of things? They don’t work right. In fact they usually react with the most inappropriate response ever. You pass out when you vomit. You try to inhale in the middle of swallowing. Instead of rising, your blood pressure drops severely when you stand up. Instead of relaxing, your heart rate skyrockets when you’re lying down. Your blood vessels constrict blood flow when they’re supposed to be allowing more. Your blood sugar may drop after you eat, or your body interprets the normal rise and fall of your glucose levels as something catastrophic and you get outrageous symptoms. Et cetera.

I really can’t put all of this together in my brain right now. I just know my body is not reacting normally to something. The only factor that ties all of this together is that, all of this has happened while I’m off of my olive leaf extract. I really need to get back on it… But one thing at a time. I must do this slowly.

[Edit: I WAS DOSED. My father accidentally gave me caffeinated coffee this morning! Now, why my body has been reacting to caffeine like it's the devil lately, I don't know, especially when caffeine has been beneficial to me in innumerable ways over the last decade. But whatever the reason, I've been off of it since my nervous system started being so easily agitated. The constrictive properties of the caffeine explains so much! And also why my symptoms were so anxiety-like! I'm relieved, now. Hopefully I'll have a healthy relationship with caffeine soon, but this makes it very obvious it's out of the question right now!]

a rainbow at night