IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.

[estimated reading time: 5 minutes 12 seconds] © a rainbow at night
After almost seven years with this infection, I think the bartonella may be gone for good.

If you recall from this previous post, I talked about how my health was either about to nosedive, or finally overthrow this infection thanks to the millions of antibodies I now get infused into my body every four weeks (certainly many of which are bartonella antibodies, since this bacteria is so common)… Guess which one happened? Continue reading “IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.”

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Trigeminal Neuralgia: A Consequence of Lyme Disease

…Or bartonella. Or mycoplasma. Or similar infections that are commonly found in the same tick that carries Lyme disease. Unless you’re like me and you happen to get them from other sources like fleas, because you’re immunocompromised and collect infections like some people collect stamps.

I’m not sure which is the true culprit. I know I started getting occipital neuralgia about four months after my tick bite, so that is definitely Lyme disease-related, but I haven’t had an attack of that in a long time; I think it’s been a year?

My serious cranial nerve involvement began when I got Bell’s Palsy immediately after contracting mycoplasma pneumoniae, an infection that usually causes “walking pneumonia” but has been known since the 1970s to also wreak havoc elsewhere, like the nervous system. It can cause just about everything that Lyme disease can, and persist even after treatment by mimicking the body’s own cells. My right eye twitched and my face drooped. I’ve mostly recovered, but some of the damage is permanent. Then my left eye began twitching and it got damaged. That is also permanent. It was all downhill from there as far as nerve damage goes, but I’m here to talk about the ones in my face.

I began treating with Rifampin and Doxycycline in January 2011, and all hell broke loose: That’s when the autonomic neuropathy made itself apparent, culminating in its diagnosis a few months later. I can’t coordinate how it all fits together, but I know my vagus nerve became damaged, my trigeminal nerve got involved somewhere, the Bell’s palsy is a factor (i.e., damage to the seventh cranial nerve, literally called “the facial nerve”), and my migraines are connected.

When the autonomic mayhem landed me in the hospital, I would try to eat something, get an “episode” where my vagus nerve would trigger all sorts of things it wasn’t supposed to, and I’d get a migraine. I got so many migraines I had to be on Topamax for almost a year. Now these days, instead of my nervous system having a meltdown, I’ll sometimes get facial pain when I start digesting, again triggering migraine-like pain on the right side of my face until the digestion stops. This can happen even if I haven’t eaten, but the act of eating can apparently be a huge trigger for trigeminal neuralgia; more on that horror story, below. But how did they all end up triggering each other?

  • The trigeminal nerve is implemented in migraines and facial pain.
  • The facial nerve can also be implemented in facial pain (ha, no kidding!), and the tongue numbness I get.
  • Episodes of trigeminal neuralgia can involve the trigeminal nerve and the facial nerve simultaneously.
  • And the vagus nerve–as it pertains to this post–is responsible for digestion-related reflexes…

But again, how did it come to be that my vagal reflexes got connected to my trigeminal response, in ways they previously were not? All I know for sure is one or more of these infections attacked my cranial nerves, and I’m left with odd, painful remnants as my body has attempted to heal.

 

After my last post, the “tension-headache-thing-that-wasn’t-quite-a-tension-headache”-thing went away and was replaced with the worst episode of trigeminal neuralgia I’ve had to date. Perhaps the tension-like pain was a precursor? (A Lymie friend on Twitter mentioned that she often gets headaches or migraines before her trigeminal neuralgia attacks, too.)

The best way I can think to describe what happened is that, I ate a bowl of crunchy cereal, and immediately after it felt like my teeth were going to explode. It’s one of those things where, if someone else told me the level of pain they were in, I would swear they were exaggerating because how is that possible? My other attacks have been similar–extremely severe, extremely sudden pain that makes you start shaking from its intensity–but it’s never lasted quite this long.

I remember a long time ago writing about another unusual headache, something that acted like “an ice pick headache that keeps on going.” In hindsight, that headache that felt like someone stabbed me in the forehead may have been an episode of trigeminal neuralgia, too. :\ It certainly sounds like it, from what I wrote.

I hate how deceptive it can be, when it starts to fade away only to attack you suddenly again. It took several days to completely go away and stop fading in and out. I have moments of unexplained facial pain daily, anyway, but nothing so severe as that. For my usual, spontaneous facial pain–the kind that is often tied to my digestion for some unexplained reason–butalbital is a huge help. It’s a huge help in my neuropathic pain in general, actually, even though I’ve never heard of anyone else using it for that. Half a tablet of Fioricet (or Bucet, which is the same as Fioricet but without the caffeine; most doctors don’t even know it exists) and that kind of nerve pain is usually gone.

Like occipital neuralgia, nothing much helps trigeminal neuralgia, or at least nothing that my system can tolerate. (Things like carbamazepine are completely out of the question for me.) That night, I was already on hydrocodone and ibuprofen, but had to take twice as much as I usually need, and it still only dulled it enough so that I wasn’t shaking. I couldn’t lie down and put any pressure on my skull until it began to ease.

The gratitude I had for being able to take those pain relievers cannot be put into words. And I’m still trying to wrap my head around the fact that something can hurt that much, and that I went through it. If you’d have told me two years ago I’d be going through something that would make my face feel like I was being stabbed and my teeth as if they were going to explode out of my skull at any moment, I’d have called you crazy.

I feel so much for people who have to go through TN, especially if they have no idea what is causing it. At least I know what is causing mine.

If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate Medical Doctor or LLMD, you probably do–you can read this and call IGeneX to order a testing kit for your doctor. Igenex has an accuracy rate of 95% and tests for all possible reactive bands, unlike standard testing which only checks you for the most common thirteen and produces a staggering rate of false-negatives. Additionally, you may watch Under Our Skin, an excellent documentary film containing people with illnesses like Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Parkinson’s, and ALS, who found out Lyme disease was the cause of their symptoms; most recovered. (Not in the US or want more help? Click here.)

a rainbow at night

(Postscript: This is not related to TN, but with this month’s Lyme flare up, I had my old parkinsonism symptoms of slow movements and “freezing” while walking. It’s been a few months since I’ve had those, and they definitely caught me by surprise, especially with how slow my hands were functioning. Those of us with Lyme disease know how startling it can be when you’re doing (relatively) “okay” then suddenly your body thinks it has succumbed to Parkinson’s overnight! Luckily, as usual, it only lasted a few days and I am all right, now.)

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

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 avoiding having to run for safety has sent my body reeling. I 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 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.

But 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 acquiring Myalgic Encephalomyelitis and Lyme disease.
  • He was actually HELPFUL and offered me HELPFUL tests and rehabilitation.

And 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 they do on steroids. Hmmm…!

As for 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.

And I didn’t prompt him at all, I swear, but I ultimately 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 a form of dysautonomia. 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 likened my nervous system to that of an infant’s, learning to regrow and rewire itself in the appropriate ways… I just hope it doesn’t miswire.

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, because then I could do something to help my body! 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. He’s giving me a referral for neuropsychiatric testing to better understand 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 the correct 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 hurt me somehow, 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 cognition will improve anyway, ha.)

Tomorrow I see my cardiologist again to 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

Another development: Is this finally 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 intestinal 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 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 thirty years ago!)

But… What else does caffeine do? Well, for some people, it spurs digestion! 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 brings me to the restroom 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 intestines began moving about, then, returning from the bathroom, 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 trip the bathroom 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), it would probably 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. To be continued, I suppose!

a rainbow at night