What My Pain is Actually Like

It occurred to me one day several months ago that I’ve never stopped to answer a question people may have, the same question I often wonder about others in my situation: When I talk about being in pain, what am I actually talking about?

In my case I’m talking about severe head pain, and what some call “malaise,” but… Malaise is what you call it when you are sick and you feel “off,” and unwell, and basically.. gross. It’s a term you can use for having a cold or AIDS, much like a fever has drastically varying levels of severity.

In “malaise” standards, what I feel is like my immune system is fighting to save my life but it may or may not actually take me down with it. Pain is usually localized, or at least, if it’s everywhere, it’s an identifiable ache. This? Maybe I should invent a new term.

Deathlymalaise. Yeah that sounds about right.

What happens in my newly coined “deathlymalaise” (feel free to use that), is this:

  1. I always have “the” headache with it, the one I’ll discuss in a moment.
  2. I have a low-grade fever, and I alternate rapidly–or maybe there is only the sensation of rapid cycling–between uncomfortably warm and sweaty, and clammy, cold, with freezing and numb extremities. It’s like when you have the flu and every five minutes you’re either tossing the blankets across the room or clambering to collect anything made of fabric and burrito yourself in it. My GP says this is my immune system. Apparently it’s trying to figure out what to do with itself.
  3. I feel dizzy and there is often a “buzzing” sensation, but whether it’s nerves sending wrong signals or my vascular system trying to sustain normal circulation, is anyone’s guess.
  4. My lymph nodes, particularly the axillary and cervical nodes (under your arms, and around your neck), have a constant, dull ache, and get stabbing sensations.
  5. I get muscle spasms in my neck, back, and all around my abdomen in general, that are so sudden and severe I usually end up screaming.
  6. I feel a burning sensation in the nerves in my face, as if they were on fire from the inside-out. I think it comes from the same inflammation responsible for my headache. The trigeminal neuralgia is thus usually activated and I have to stop myself from clawing at my face–that wouldn’t help much, now would it?
  7. I feel as if I’m going to vomit, but I won’t let that happen–I take Zofran as necessary.
  8. My joints–moreso on my left–swell and get stiff, difficult to bend or move.
  9. There is substantial fatigue during these “bursts” of deathlymalaise, but sitting or–more appropriately–lying in one place is usually not an option because this is the kind of suffering that, on the pain scale, would be at the level that it interferes with your every thought.

I’m a complete and utter wreck. And please remember, this list is only covering the malaise part of the illness, something that has been very prominent since The Big Relapse. It’s not medication withdrawal, because these symptoms are part of the reason I started taking anything to begin with, and it’s not herxing. It’s just disease. It makes me uncomfortable to even type that, but it is what it is. I can’t sugarcoat something like this.

I usually feel aghast–but almost in awe–at the reality that a person could possibly feel so horrendous, and helpless at the thought that a hospital–the place you’re raised thinking can always help you during any health crisis–cannot do anything, because there is nothing to stop what’s happening. How do you explain to someone how terrible all that feels, with the word “malaise”?

Several of my friends who also live with Lyme & Company admit to feeling this, and even writing letters or notes to loved ones during the worst “episodes” because they think surely something must be about to go very, very wrong for the human body to give out all these warning signals.

They usually say, “I feel like I’m dying.”

We really do.

 

The progression of my headaches has been a monster all its own. Their onset began with occipital neuralgia four months after my tick bite, almost seven years ago. Bartonella came with its own, mostly frontal-oriented headaches; I don’t have those any more. But almost without fail, I have had a particularly severe headache for 4-5 consecutive days every four weeks since the Lyme invaded my nervous system. Now, that exacerbation happens about every two weeks, thanks to the Mycoplasma.

I used to need prescription-strength medications for breakthrough pain only a few times a year for the attacks of occipital neuralgia. As things steadily progressed (especially within the past two years), I went from needing them an average of 1-3 days per month, to having 3-week-long bouts of unrelenting head paid which alternated with 3-pain-free weeks, seemingly for no reason. Since my relapse in October, I’ve needed them every day except 1-3 days per month. I guess all of this is why needing them so much frightened me: I wondered–and still wonder–if there is no turning back from this point. Regardless…

This head pain is a throbbing sensation at the back of my head, the base of my skull and down into my neck. I wouldn’t outright call it occipital neuralgia, because my attacks of O.N. are even more severe and almost completely untreatable. But otherwise, it’s just like them. Baby neuralgias? They even exhibit the so-called “ram’s horn pattern,” and the top of my head often goes numb, and I am sensitive to anything touching my scalp. There is no sensitivity to sound, but extreme sensitivity to light. I get bursts of nausea. Since vasculitis has been such a major feature of this relapse, these “headaches” may have some vascular component.

As of right now, later this month my pain management doctor wants to try a shot in my neck. I’m uncertain is he intends a nerve block for O.N. or another route, but since this has gone on so long, it’s time to try something new.

 

There’s not really a pretty way to sum this up. But when I talk about being in pain, to all of this is what I refer.

 

a rainbow at night

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!!)

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

On livers and Lyme and dystonia and…another antibiotic break.

On Thursday, the 5th of April, I upped the minocycline to 200mg a day. For the next few days I only noticed a greater need for sleep. Since starting the minocycline in general, I had a greater need for lortab/vicodin (at least once a day) to deal with the head and neck pain (read as: severe), so that also got worse temporarily before tapering off into less-severe pain.

Mostly because of this, my sinuses were really bothering me (hydrocodone causes a release of histamine, and when you stop it, then you can get a rebound release of it), so I had to take Nasonex for several days–it helped so much, and by days Three and Four of being on it, I was outside taking pictures of flowers!! I figure it might have been helping subdue some of the herxing because of its immunosuppressive tendencies. After day Four I was able to stop that, too, since my sinuses had returned to normal.

Then on the 9th I got a fax from my doctor saying my liver enzymes were very elevated. This, after them being perfectly normal two weeks earlier, and me still taking milk thistle three times a day!! I was upset, but I had to stop all antibiotics again.

I don’t know if it was from not taking my antibiotics, beginning that morning when I got the fax, or rebound inflammation from stopping the Nasonex, but I felt absolutely horrid starting that day, and did every day after/have every day since. We’re talking complete flu-feeling and just.. awful. It was the metaphorical equivalent of hitting a bear over the head once, and then standing there staring at it. Lyme is a very, very angry bear. To further my physical suffering, a few days later my Lyme flare up began! D:

And then an old Lyme-related friend came to visit me: Dystonia.

(I tried to kick it out–you must mean the house down the street, no rainbows at night, here!–but, that didn’t work.)

And not just dystonia, but that special brand of dystonia with parkinsonism thrown in there that makes me unable to walk, that makes everything on my left side either fail and freeze, or flail and dance. (Why does Lyme like the left side so much? No one can figure it out, not even the doctors.) It began on the 14th, when I got out of bed, took two steps, and my left leg decided it wanted nothing to do with this “walking” business. Luckily, there are wheelchairs. I still had a lot of movement problems even wheeling about the house, but standing up makes it so much worse in general, even if I’m not trying to walk. It got worse on the 15th and 16th…

I wish I could adequately describe what this type of movement disorder is like. A dear friend of mine in Pennsylvania has the exact same problems I do (also hypertonia, also brain lesions) and despite telling her this, she really didn’t “get” that we were having the same issues or that I really did understand what she meant when she explained them! Then one day I guess I explained it pretty well, and she understood, and didn’t feel so alone. I wish all of us Lymies could record ourselves having these problems and put them on YouTube to give each other some comfort that we’re not alone…but I don’t know how many would go through with it. I know I don’t want people to see me when I’m having these problems; like most, I’d rather just wait it out! :\

Anyway. So a typical “episode” of this happening might start with me attempting to walk. A varying amount of time passes before I slow dramatically and then my left leg will start to drag. If I stand in one place it often curls inward. If I try to walk it is essentially frozen, or moves so little that I might end up walking on the tips of my toes to compensate. Something around my hip/thigh happens and my leg jerks upward, causing me to simultaneously fall forward, often twisting my neck to one side at the same time “for some reason.” I don’t always have to be walking for this to occur. I know low oxygen (or at least low oxygen ratio) makes this worse, because supplemental oxygen always helped in the past.

“A major principle of body movement is that all muscles have an opposing muscle. Movement is possible not just because one muscle becomes more active, but because the opposing muscle relaxes. …Rigidity comes about when, in response to signals from the brain, the delicate balance of opposing muscles is disturbed. The muscles remain constantly tensed and contracted so that the person aches or feels stiff or weak.”

Other times it involves my face and neck–like an episode of Bell’s Palsy that isn’t so much the nerves (I don’t think, at least) as it is the muscles contracting, and causing issues like facial grimacing, an inability to open my left eye all the way (lots of times I cannot look upwards, which is truly disturbing–I don’t think this is dystonia but I wanted to mention it anyway), and my tongue might tremor, etc.

This time, much to my dismay, my arms were involved, interferring with my typing. :( It wasn’t the M.E., and it wasn’t the neuropathy that’s started to invade my arms causing the weakness, but something different. (It’s probably impossible for me to put the difference into words, but I know what that feels like.) They were doing the same thing my legs did–gradually getting slower and slower and it was as if the nerves were failing to send adequate signals, where in my head I was giving them the action I wanted them to perform but everything was going very..very…..slow…… :| (But not the paralysis and takes-five-days-to-recover like the M.E. muscle failure; this is far more neurological.)

And then the 17th happened. Or rather, the night of the 16th when I tried to sleep. I spent all night waking up every hour going “omg I’m going to vomit” and “omg why is everything moving” and then when I woke up once at 7am, the back of my head was killing me (figure of speech, of course). And thus began the cycle of the next five days. But at least after about the 18th, the dystonia and parkinsonism got better and I could walk again. Oh, the things I had happen every morning… One morning was like I described above, for another it was all I could do just to roll onto my back and take medicine, another was gastrointestinal nerve problems that immobilized me in pain, then to add insult to injury, I woke up dehydrated, because I usually do during Lyme flares; it has been an incredibly difficult couple of weeks! What got me through it was knowing that it would pass.

And it did.

The 22nd I felt good enough to take a ride to the city. Well, with the help of adequate medication for pain and inflammation. Right now I’m waiting for a supplement to arrive (tomorrow), so I can resume antibiotics.

I can’t thank God enough for such an absolutely amazing doctor to get me through all of this. Especially after so many years of people who didn’t know what they were doing, no idea how to help me, or just passing me around from doctor to doctor. (From primary to cardiologoist to neurologist to immunologist to infectious disease specialist to another cardiologist to another neurologist to a movement disorder specialist to…) I feel safe in God’s hands and my LLMD’s experience to get me better. He called and told me this herb collection to order for my liver, called Liver Chi. He says he has patients with Lyme-induced MS who are on triple IV antibiotics, their liver enzymes inevitably going high, but who can’t stop treatment for fear of their disease progressing. He thinks I am in that group with the rate that my symptoms progress the moment I stop antibiotics. And if this supplement (a mix of chinese herbs) has been able to bring theirs back down to normal, on all of those antibiotics, I’m sure it can help me get back in treatment! So he said to take a two-week break (which I have), and.. essentially, don’t wait, get the herbs, and resume treatment whenever I got them. And of course keep checking my enzymes.

 

I’ve been doing a lot of art lately to help me cope, so here are a few pieces. Three photos, three paintings. You can click on “Permalink” when they open in the gallery, to read more about any piece you want.

Things I want to add into this post but have no idea how:

  • Ibuprofen always helps. Always.
  • My PCP says I should tell my cardiologist about the fact that I feel like I’m going to pass out when I take a deep breath–I actually had to lie on the examining table this time, which is new. My first guess is my usual lack of my heart rate variability and the fact that it’s supposed to vary when you inhale deeply, but mine often doesn’t… But that’s autonomic neuropathy for you.

a rainbow at night

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

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

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

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

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

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

  a rainbow at night

Cardiologist appointment… Oh, and other things.

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

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

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

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

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

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

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

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

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

a rainbow at night

Important discovery: Intracranial hypotension/hypovolemia.

What is it, time for me to see how many random ailments I can rack up within the shortest time frame?

After research, I’m confident enough to say I’ve figured out this very peculiar headache I’ve gotten the past few days. I think I know now why the headache I got two days ago didn’t respond to meds like they usually do. Because it happened so close to my flare days, and was just as painful as they usually are, I didn’t think much of it. But yesterday, when it persisted, I really, really thought something else was going on.

Yesterday, I felt fabulous. Finally better! However, my head continued to ache when I sat up, and got extremely painful when I stood up. As long as I was lying down it was barely noticeable. It hurt on the top of my head, a sensation I’m not entirely unaccustomed to–I sometimes get this with my occipital neuralgia attacks. But this was different. I tend to say it feels like there’s not enough oxygen/blood getting to my brain, because it’s so obviously a pressure problem… But what I didn’t realize, was that the pressure in your head can be something seperate entirely! These orthostatic headaches usually happen to me when my overall blood pressure is low, and you can literally feel all the blood come rushing away from your head. But as I said, yesterday I was fine, with the exception of my head hurting… I knew there had to be a name and an explanation for this, so last night I set out to find what it was. I couldn’t help myself, being a researcher at heart.

WELL. It turns out, I am most definitely suffering from low intracranial pressure, thus causing a headache because the decreased pressure isn’t enough to keep my brain properly suspended, resulting in it giving in to gravity, if you will, and literally pressing against/into the hole at the bottom of the skull (known as the foramen magnum), where the brain and spinal cord meet. It makes perfect sense as the why it hurts so much, yes?!?

“Headache resulting from the removal of CSF with subsequent decreases in intracranial pressure (ICP) is a well-known phenomenon.  This most commonly occurs after lumbar puncture (LP), but may occur spontaneously or as a result of trauma.  The headache is usually worsened by sitting or standing upright and improves or disappears with lying flat.  Pain is steady, often described as pulling, and occurs most commonly in the vertex [top of the head] or occipital [back of the head near the neck] regions.  Nausea is common and transient 3rd or 6th nerve palsies have been reported.  Nearly all of these headaches will resolve spontaneously over several days.  Bed rest and fluids are recommended but have not been conclusively shown to speed recovery.  In cases occurring after LP that do not resolve with conservative management, autologous blood patching in the epidural space is indicated.”

I guess even the random nausea that I mentioned last post also makes sense, now.

This is the same type of headache I got the day after my first neurologist visit, where I said, “It’d be risky to get a spinal tap because I already get symptoms of the type of headache you get after them, the ones that are supposed to tell you whether or not you need a blood patch to stop a CSF leak. If I get these headaches anyway, how am I supposed to tell whether or not I’d need a patch?!” Not having had any spinal taps, I figured there had to be some other explanation for the headaches…but it turns out you can get decreased intracranial pressure without having had a tap.

Interesting bit of information: Remember last post when I said my eyes haven’t twitched since April?  Well that time in April was the day after my neurologist visit, the last time I had this intracranial headache! I was so relieved to find that out, because it probably means the extreme twitching I got those three days was instead a neurological quirk from the nerve irritation and not a bug flaring, this time! :D (It also explains why I’ve had so much trouble focusing my eyes the past few days–they seem to want to go all over the page, which is yet another symptom of this low intracranial pressure.)

It also, and perhaps most importantly, explains another strange phenomenon I’ve had the past several months: Sometimes when I take my Topamax, it actually GIVES me a headache. I found out last night that.. Topamax can decrease intracranial pressure. :((( I halfway wonder, now, since I started it in March after I got out of the hospital, if this is why I’m having these issues at all! Since I’ve been wanting to quit it for months anyway, I am promptly weaning myself off of it–which, please, I wouldn’t recommend for people who don’t know what they’re doing!–but because of my medication sensitivity, I only ever got up to 25mg. I’ll take half for one week, and then cut it into fourths another week, to be sure. Hopefully my migraines won’t relapse, but even if they do, I’ll have to find another treatment. I still have Imitrex in case I get any of those semi-dangerous retinal migraines.

I’m kind of horrified, but also kind of excited by this. First off, I know what it is now, so I can properly treat it. (Read as: I will lie down instead of being stubborn, before it gets to the severe stage!) The only thing I need to figure out now is…why are they happening? Is it truly the Topamax? Or do I actually have some sort of cerebrospinal fluid leak? That would certainly need to be fixed… Do the infections aggravate it or is it just coincidental timing? I guess it wasn’t really coincidental this time, because it persisted even after the flare, which is what allowed me to notice something wasn’t right. I know I still have bugs to fight, but I’m semi-excited at the possibility of some of my more strange symptoms being potentially caused by something they can actually just go in, find, and FIX. Maybe some of my autonomic symptoms are being aggravated by this? Ha, is it strange to almost hope you have a cerebrospinal fluid leak?

Please note I NEVER recommend Wikipedia for health information, but once in a blue moon, their information is accurate:

“A spontaneous CSF leak, as opposed to traumatically caused CSF leaks, arises idiopathically. A loss of CSF greater than its rate of production leads to a decreased volume inside the skull known as intracranial hypotension (ICH). A CSF leak is most often characterized by a severe and disabling headache and a spectrum of various symptoms which occur as a result of ICH. These symptoms can include: dizziness, nausea, fatigue, a metallic taste in the mouth (indicative of a cranial leak), myoclonus, tinnitus, tingling in the limbs, and facial weakness, amongst others. A CT scan can identify the site of a cerebrospinal fluid leakage. Once identified, the leak can often be repaired by an epidural blood patch, an injection of the patient’s own blood at the site of the leak.

Some patients with CSF leak will develop headaches that begin in the afternoon. This is known as second-half-of-the-day headache. This may be the initial presentation of the CSF leak or appear after treatment, and likely indicates a slow CSF leak.”

The “second-half-of-the-day headache” really matches this so well, because I have woken up with no headaches, but the more I’m awake (i.e, the more I’m upright), the worse it gets. On the other hand, my infection flare headaches usually do the opposite and get better by the evening (and respond to medication–unlike these). And they feel more akin to a brain swelling than a lack-of-oxygen feeling.

I think I mentioned last post that I had one final trip to my good neurologist, and I can’t wait to bring this up incase he wants to order more tests to see if there’s anything that can be done. I’m so glad that I didn’t–for a multitude of reasons–get the spinal tap he wanted me to have back then: Goodness knows the problems that would have caused, if my pressure was already low!

Always learning, always learning.

a rainbow at night

[Edit, January 2012: Bittersweet, but it was apparently just the Topamax! I haven't had one of these episodes since stopping it.]

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

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

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

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

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

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

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

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

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

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

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

a rainbow at night

Here we go again! (A real post, this time.)

All right. A real update! (First, a minor apology for anyone who got some semi-annoying “test” posts e-mailed ot them. I was in the process of moving my personal blog over to WordPress and I wasn’t sure how the password part worked.) Let’s see…

As far as I’m aware, the strange macular rash on my stomach is gone. For now.

My weekend sickness? Otherwise known as the Saturday Blues? Well, in the beginning it was from Friday to late Saturday. Eventually it was all of Saturday and Sunday, which is when I mainly started to notice it. A couple of weeks or so ago it started to be Sunday and Monday and now, I think it has moved even further down the week. (I do recall pondering the possibility of it working its way forward, but other things could be causing this, such as when I had to stop antibiotics for a week last month, and the re-exposure to new bugs via the fleas…)

All this weekend, I was fine. On Sunday I even chased my dog around for a minute! But Monday night I started getting an awful headache, which I’ve had since. I’m unsure if it’s a migraine or not, because it moves around and started in my neck, which is not typically migraine-y…? But I did get an absolutely awful episode of Alice in Wonderland syndrome the night before. But yes, then Tuesday wasn’t great, but by the time I woke on Wednesday I was in full meltdown mode, as if it were a weekend. Then today was even worse. I did have a fever yesterday and much of today, but no thermometer to check its severity. I’ve been so medicated. Ibuprofen every few hours, Lortab every four hours, and I’ve already gone through half a pack of my ginger gum whereas I usually only need one per day! Every morning since Tuesday I’ve (worser each day) woken up with simultaneous excrutiating head pain, wanting to vomit, and the room spinning. I know some bug is flaring up, because I have been fighting dehydration for three days, and subsequently had very, very bad Postural Orthostatic Tachycardia Syndrome–I’m lucky to be able to be upright the few minutes it takes for the restroom! Yesterday my father even asked if I needed help getting there, which was truly humbling. (Do I look that bad?) And for it to be happening despite me getting adequate water and electrolytes… It’s typical of my spontaneous bug-related dehydration episodes. (But no hospitals!) Even worse, my cardiac symptoms, which spung up with September’s Beginning of the Month Lyme flare, are in general so much worse, and they haven’t left yet! In addition to the arrhythmia, I’ve also had chest pain, and I’ve been struggling to breathe. I am always needing to take a deep breath (it’s not air hunger, though) and it gets worse when I lie down. So, further evidence for my electrolytes being off, as far as arrhythmia, but… The chest pain, and then difficulty breathing when I lie down…?

I’m starting to wonder if whatever I picked up from the fleas is affecting me worse than I initially thought. I do have an appointment with my LLMD on the 14th, and I’ll be telling him about all these things in case he wants to test for something. I’m not sure what it would help, since I’m already on the treatment, but… It might be important to document re-exposure, if it did happen. So that’s where we’re at…

…I just took a moment to read my last post and noticed that I had nearly the exact same symptoms last Tuesday and Wednesday. Severe headache that started in my neck, bouts of severe dizziness, and (though I forgot to write it above) I also had shin pain yesterday, just like this time last week… Ah! See, this is why I keep a health blog. :\ I had forgotten all about last week, but there seems to be something of a pattern with these symptoms. I really hope next week isn’t this bad–especially because my appointment is on a Wednesday! That used to be the best day fo the week for me, but its’ certainly not anymore. You just have to go with the flow, though. I’ve really been into Buddhist teachings and everything concerning living in the moment. Because that’s all so many of us can do–take it one moment to the next, and enjoy as much peace as we can along the way.

Til next post!

a rainbow at night

Improvements, no more oxygen machine, and symptom recap.

I know not if it’s to do with this recent bout of occipital neuralgia (that left me completely by Monday), but my eyes are having a lot of problems ever since. Last night I had to go to the restroom, turned on the light, and started shaking from the pain it caused to shoot through my body. I’m always sensitive to lights but that.. that was something else entirely.

I’ve managed to keep some type of headache–whether it’s remnants from the nerve irritation I’m not sure–even when the majority of the skull-splitting pain has left. I’ve been seeing things. Lots of things. Shadows, bugs, black specks, colorful spots, dancing zigzags. I distinctly remember mentioning this in my video post from earlier this year, so I know it hasn’t been that long since these have flared up. I usually associated these symptoms with bartonella becuase it was when I got that infection (though unbenounced to me at the time) that I began to “see things” all the time.

As far as the bart goes, I’m not sure of my last flare besides around the 14th. Yesterday I was plagued by severe muscle spasms, there were the eye problems (they hurt so much upon moving them, even just to look around), and that night I had another terrible headache that was focused in the front of my head… Then today woke up very moody, nauseated, and no appetite… And by this evening all of that has gone away. Sounds typical bartonella-ish to me, particularly the muscle spasming, eye-related symptoms, and headache.

Other notable, strange symptoms are the heat sensations in my feet, and the facial grimacing…. Though, to clarify, it’s not as much a grimace as the muscles in the left side of my face just tend to go downward. I’m just not sure what else to call that? I think I had a worser cough yesterday as well. I mentioned my throat having inflammation and sores a few posts ago, and I’ve had a lot of throat pain focused around the lymph nodes the past two days. I take ibuprofen for this and it helps a lot, for the pain and for just about everything else.

I’ve been feeling better as far as fatigue and dizziness goes. I’m unsure of where those several weeks of dizziness came from, but… I’ve also been walking more! And today..  today! Today, at one point, I got out of bed and stood up and walked to get something. That’s from lying down, to walking, and I didn’t pass out. Now, at other parts of the day I attempted this, and let’s just say I was lucky my bed was behind me… But the fact that I was able to do this at all, is a great thing!

During my walking, my left leg begins to go dystonic, and that’s actually more of a hinderance than my blood pressure, lately. I’m unsure if it’s due to nerve damage or perhaps a minute oxygen imbalance because of me standing, that’s producing the dystonia there. It was one of the first places to get the symptom–even when low oyxgen wasn’t a problem for me–so perhaps it will be the last to leave?

Also, tomorrow the pharmacy is coming to pick up my oxygen machine as I haven’t needed it in two months! I ma so excited! :D I hope to never need it again. Next step: Get out of wheelchair, dare say I, completely?

I’ve been remembering to take my ubiquinol and olive leaf extract. That’s.. very important. Bad things happen when I forget them. You’d think after all these years I’d have learnt that by now, but… When the Lyme-brainfog caught up with me, I was forgetting things left and right. I think I’ll do another month of these low dose antibiotics and then in June, talk to my LLMD about moving up the dosages.

Oh, did I mention? I was tested for B12, B6, B1, and Zinc deficiency. All normal. And they YET AGAIN tried to get my Lyme and bartonella titres, but of course, nothing turned up, because I just don’t “do” antibodies. But! I’ve met my insurance deductible, so now I can get tested with IGeneX again! I’m excited to see if even more bands will show up this time. The first time I only had one band; the second I had five. I wonder what will pop up now, especially being on a cyst buster (Rifampin) that has released a lot of my initial Lyme symptoms? (That means the bacteria are active, which hopefully means my body will create at least a weak response to them, enough to be picked up by IGeneX labs.) This time I’m also going to do their Bartonella FISH test, their Babesia FISH test, and the PCR test for Ehrlichia and Rickettsia (the latter of which I truly think I have sometimes, due to the rash that was on my feet for two years). All I have to do is.. call and order the test kit! Which I should probably do tomorrow, hmm?

a rainbow at night