The Killer in the Crowd

♪ “Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

Something I never considered the IVIG might do was the one thing I’ve diligently avoided doing at all costs for the past two years: Wake my immune system from its compromised state of complacence. Because that, in turn, as has happened every single time over the past six years, would reactivate my latent bartonella infections.

But that’s exactly what it did.

Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog since the beginning, but this short post from January 2012 might help a little.

I realized a year later that my symptoms were re-emerging and my bloodwork showed increasing signs. From then on I did everything I could to not stimulate my immune system, especially avoiding antibiotics at all costs (i.e., in the event I caught something extra; because as we know this entire treatment-failure conundrum was caused by me being unable to tolerate antibiotics to treat the Lyme, bartonella, mycoplasma, etc.). Because of this, and thankfully so, it remained somewhat latent in contrast to how quickly it spread the first few times it was active. From past experience, I’d seen that activating my immune system in any way triggered it to attempt fighting infections wherever they existed, despite my immune system not having everything it needs to actually fight, or even being able to use what it does have, efficiently. I’d found out the hard way that to reactivate bartonella was to initiate my imminent decline: The first time this happened, I was bedbound within eight months; the next, within just four.

Well. All the symptoms that have occurred periodically since the bartonella relapsed, are once again emerging VERY reliably every 5-6 days (usually five, as is part of the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before fading as quickly as it arrived; the worse “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Unsurprisingly, its pattern started five days after my first infusion in October, and has continued ever since.

A part of me just cannot believe this is happening again. The other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection.

The worst flares–the ones that scare me–happen right before my infusions, when my immunoglobulin levels are at their lowest. I get IVIG every four weeks, but at my current dose the effects only last three weeks… So the fourth week, my system has fallen back to its usual, immunodeficient state, which means I am at mercy of a potentially-fatal infection with little to give it pause.

I discussed this with my immunologist today and he has upped my dose. We’ll see with my next infusion if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\ (I hope not; I don’t know if I could handle that, mentally.)

I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than their office, and wasn’t even sure if I should go. But within two minutes of praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. For one, I was hydrated, but I also no longer felt like I was being mauled by a bear from the inside out. The flare completely stopped.

For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can now fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.

If I can continue getting IVIG reliably then maybe several months from now my new-and-improved immune system, thanks to literally thousands, upon thousands, upon thousands of donors, can finally overthrow bartonella (and maybe the other, less-rapidly-progressive bugs?), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path.

I regret nothing.

a rainbow at night

Advertisements

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 also a term you can use for having something as simple as a cold or as insufferable as end-stage 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. Most types of pain are 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.

[ETA, 2016 Feb] In Dr. Hyde’s book about Myalgic Encephalomyelitis (which back then in 1992 he abbreviated as “M.E./CFS”), he describes our malaise like this, under “Pain Syndromes Associated with [M.E.]”:

” ‘Malaise has probably occurred in every [ME epidemic] described in the literature.’ Malaise is accentuated in the Initial Stage and it recurs for as long as the disease process exists. Malaise is almost impossible to describe. It is often referred to as the pain and discomfort that one has during the acute phase of an influenza. However, it is not always the same. The patient feels terrible, feels as though he is about to die.

“It particularly injures the sensory and dulls the cognitive abilities of the brain. The pain seems to originate everywhere, both on and within the chest and abdominal areas, head and extremities. The rapid muscle and brain fatigue that is normal in [M.E.] becomes accentuated.”

As you can see, what I described when I first posted this in 2013 is almost exactly what Dr. Hyde wrote; I was absolutely floored when I read it, and honestly, most of the book is like this: full of specific, uncanny validation about all the quirky things that occur in this disease. If you have M.E. I highly suggest you buy it while it’s still available.

Some of the other things I wrote are very specific of Lyme disease, such as the burning in my face where the infection damaged multiple nerves, and the “buzzing” sensation, which many Lymies describe as, it’s like you’re sitting atop the hood of a car while it’s running. [/ETA]

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, some 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 (or at least, I assume).

I used to requite 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 pain which alternated with 3-pain-free weeks, seemingly for no reason. Now, since my relapse in October, I’ve needed them every single 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 close this article. But when I talk about being in pain, to all of this is what I refer.

a rainbow at night

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

Almost finished with bartonella treatment!!

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

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

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

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

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

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

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

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

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

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

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

a rainbow at night

More rashes?

So first off, HEADACHE TIME. My eyes hurt and the front of my head hurts, but no sound sensitivity. I’ve been using the wheelchair off-and-on the past few days to make things a little easier on myself–whether it’s the joint pain or the blood pressure or just being out of breath at the time, lots of things are making it difficult to get around right now! It’s always easier by evening, though.

After some chatting on the support groups it would seem that my persisting joint pain might actually be bartonella, but the really severe episodes I have where I wake up unable to move my knees might still be Lyme. I haven’t had other instances of that, though I am now generally arthritis-y in every joint, particularly my hips, which is.. not typically Lyme-y to hang around like that? I can’t remember ever having this before. I’ll keep track of it but I’m glad I’m not the only one to experience this during treatment.

But what has startled me to make this post isn’t to rant about the joint pain, which I’ve accepted as a random part of the Bactrim that’s hopefully killing the bugs. No, this is Tuesday, so mid-week flare (previously the Saturday/weekend blues) is upon me. Right now I have another ankle rash. It’s an itchy, slightly rasied red area, with clusters of red pinpricks in it. I also have some other spots on my lower legs, that do not itch, and the red dots on my feet are back as I feared they might do. They’ve been appearing slightly the past few days–so whether it’s Lyme or bart or any combination of things, something is definitely active within me right now. These also do not itch, but some of them are much more prominent/noticable than the last time they sprung up. There are fewer of them, though?

This ankle-cluster-rash is the exact same thing I got a couple weeks before the whole tree thing happened, BEFORE I got re-exposure to the fleas, so I’m more likely to believe it’s something I already had than it being the result of mysterious-new-flea-infection. I don’t know what to make of it. About two weeks ago I got a similar bump-thing above my left knee that looked like a scratchmark, but it wasn’t? It gradually faded away as all of these do.

What exactly is going on, here? Is this another case of “one infection is down so another is going to pop up”? Or is this just another strain/another side of the bartonella infections I’m trying so desperately to eradicate? I’m halfway tempted to make an appointment with my (not-Lyme Literate but still Open-Minded) infectious disease specialist and see what he thinks might be going on. If it were a med reaction, it’d be consistent, wouldn’t it? Not just randomly happen when I’m also experiencing bug-symptoms?

This is confusing. :\

a rainbow at night

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

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

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

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

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

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

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

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

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

a rainbow at night

Lyme Flare Recap and a Small Rant About Diseases “Existing”

I’ve decided to do things a bit differently this post. I’ve been planning this entry for four days, but I’ve been so severely confused and disorganized that it’s been a huge struggle! I did manage to scrape together some random notes for a private entry on Monday, so I can use those to help me. Several things to say this time around, but first thing’s first, considering the entire reason I have this blog: Symptom recap.

This has been the lightest Lyme flare I have had in months. I was not bedbound! I barely had any dystonia and I had no cardiac involvement whatsoever! I did get parkinsonism. But the main feature has been extreme cognitive dysfunction (brainfog, if you will). My eyes dance over words instead of reading them, my brain hasn’t been able to form sentences in the right order, and my memory is on temporary hiatus. I’ve also had moderate-severe fatigue, which was expected. I’ve fallen asleep numerous times during the day, and the fact that my sleeping has been so disorganized at night does not help. There’s been more difficulty breathing, and my herxing has been worse, which I seem to recall happening last month around this time as well? I did have a day or two where I was extremely thirsty, but I don’t know if it was infection-related borderline dehydration or Zoloft-related cottonmouth… And I had several “headache bursts” from the 19th-20th; it eventually stuck on Monday, and moved to my neck, so I needed Lortab and ibuprofen. My back was hurting, specifically my upper back (another Lyme trend–it used to be my lower spine, but more recently it likes to affect my upper spine), and I also had the strange arm numbness phenomenon that happens, with certain severe headaches. Monday night was severe as far as the dysautonomia is concerned; my tongue was completely numb, and my face tingled. I was also anxious, which tends to happen when the vagus nerve is being.. out of line. Sometimes when I digest, it can feel like an anxiety attack without the anxiety, if one can imagine that sort of thing.

Otherwise, I’ve been seeing things more often (again), starting at least around the 17th. There was a possible bartonella flare on the 19th-20th: I had a ton of shin pain, and moderate amount of foot pain. However, my legs were also sore in general, so I’m unsure if this cluster of symptoms was bart-related or just activity-related. That said, I also had the moodswings, the muscle spasms, and the frontal headache, so…

Being in the sunlight for five minutes on Monday started a systemic reaction that lasted all night, even with ibuprofen. It’s not arthritis or joint pain, but it makes it difficult to bend my joints, because it feels like something is tearing. My joints are warm to the touch. Does anyone else get that? It’s funny, because it’s a Lupus-like symptom, but I happen to be one of the people with (multiple!) negative ANA results! I find that ironic in a world where it seems like everyone with Lyme gets a positive ANA at one point or another.

Also, I’ve had tinnitus for a month now…at least, that I’ve noticed. There is always some type of white noise in my surroundings, and I’ve noticed for the past month that whenever it’s truly quiet, my ears are ringing constantly. They of course started doing strange things when I started the Zithro, and there were those couple of weeks when my equilibrium was completely off, so I’m assuming there’s some inner ear component to this illness. Who knows, I’ve always struggled with ear infections. It was even an ear infection that made the M.E. relape, as well as caused scarring from the persisting inflammation; truly, who knows! But I hope it’s not permanent!

I saw my primary physician on Monday, which is why I left the house. She was very glad to see the treatments are finally working for me; even she was starting to wonder whether they’d be worth it. She was pleased with the combination of medications I was on, also. She said Rifampin added to other antibiotics can increase the effects of those other antibiotics, so even a small dose is still like a superdrug. Makes perfect sense to me, and helps solidify all the things I’ve “heard” about Rifampin increasing the effects of other antibiotics: It’s true!

Now, would anyone like to see a few photos for a change? First off, about three weeks ago an “anonymous” friend mailed me a Giant Microbes plush of Lyme disease. I took a picture of him! (And eventually found out the friend.)

Then the day before, another friend mailed me a box of assorted presents, including a belated sugarfree Easter bunny! There was also origami (cranes in a box and one dragon), a gorgeous necklace, more sugarfree chocolate, soothing scented candles, and.. baby spirochetes!!


Aren’t they just adorable? I unraveled the one at the top to sling around a bit, ha! What I didnt include in the picture are the new notecards (complete with rainbow-esque case), but that’s because I was too busy using them to keep myself organized!

Also, the card has a Yorkie sticker on it. That’s because I have a yorkshire terrier/maltese mix (technically a Yorktese), named Muffin. My family has been taking care of her for the most part until just recently, when, with my improvement, I’ve been able to be more of a dog mommy to my own dog. She’s still growing her hair, but here is a recent picture of her!

It took so long to get a good shot of her–I eventually had to put the camera on the ground!

And one last thing. As a fair warning, please do not send me e-mails telling me how you do not “believe” in M.E., or chronic Lyme disease, or whathaveyou. I’ll simply block you, like I’ve had to do once already this week. (What a  coincidence–or not–that someone found my blog this week by searching for “myalgic encephalomyelitis why no one believes my pain.”) It’s bad enough that I can’t talk to people with Lyme disease without them doubting that M.E. exists, and that I can’t talk to people with M.E. without them doubting that chronic Lyme disease exists. They BOTH exist. I had one, then I got the other; I am your proof. Do you have any idea how hard it is to get support in either of those communitities? And for that, I blame the CDC, for literally CREATING the category of “CFS,” so that people are forever being misdiagnosed with this catch-all syndrome instead of their real ailment, whether it’s M.E. or Lyme or cancer or whathaveyou. Like a friend said: If I had HIV, would people question that I couldn’t have HIV because I had Lyme, or vice-versa? No. They understand that they are distinct, both disastrous, and you can have them both. You treat them, and you do the best you can.

I’ve given everyone lots of accurate information about both M.E. and Lyme disease through the links on the right side of this blog. Please make use of them before contacting me about such offensive matters.

Until next time!

a rainbow at night

No more oxygen machine! (Improvements 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

The Headache That Stuck

I think this headache started about four days ago. Since this has been my “Lyme week” I didn’t really think anything of this come-and-go ache in my neck, back of my skull, front of my skull, and sometimes temporal area. I’m sure my blog’s history will reflect that this time of month usually gives me a severe headache lasting three-five days.  (Other Lyme symptoms have also been showing, such as two days ago my legs were extremely weak the first part of the day for no other cause, and the left side of my face has been doing that “grimace” thing.) But now, it seems it’s stuck there.

Yesterday I had just medicated for this headache, when sudden storms came through. Instant migraine. But I couldn’t take my usual migraine med, due to having just taken medication for the Lyme headache, and with the M.E. making me so sensitive to things… Well, I couldn’t risk an interaction. So I didn’t get to take my migraine medication until several hours later. It sort-of worked…

Long story short, I don’t know WHAT type of headache I have right now. My neck hurts, the back of my head hurts, and the right side of my head hurts. Sound doesn’t make it any worse than usual (since I have sound sensitivity anyway), but light is excrutiating. It barely responds to anti-inflammatories, barely responds to Lortab, and does not respond to Treximet (migraine). This is very typical of missing that special “window of opportunity” to treat a Migraine, because after a certain point, the constriction of blood vessels makes it hard to absorb medication properly. That might be what’s happening here. Which would mean my only option besides waiting it out would be to go to the hospital for an injection, which I really don’t want to do because the relapse caused by THAT would make me even sicker… Ahhh. I do hope it goes away by tomorrow.

In happier news, since my last post, I have had less severe dizziness and less severe fatigue. But that might just be because of the Lortab and its strange (or not-so-strange) effect on my immune system…

a rainbow at night

Update: Oh, right. That.

Ice pick headache…that keeps on going?

On Tuesday I left the house for the first time in two weeks. It was great. I got my hair cut. :) But as is usual, I got a horrific headache that night… Possibly the strangest, worst, and most sudden I’ve had in a while, actually.

Around midnight I got up for the bathroom, came back, and somehow within that span of two minutes I now felt like someone had stabbed an ice pick into the front of my skull, between my eyes (but the left one primary hurt). I started shaking, rocking back and forth, and clawing at my face. Oh, goodness, it hurt… The mere twenty minutes waiting for the medicine to start working seemed like hours. And I still don’t know why it happened?!

Turns out there actually is a kind of headache termed “ice pick headache” but they’re only supposed to last a few seconds. This one lasted hours. I’ve found some connection with it to migraines, and as I’ve figured out recently I do have a tendency to get a Migraine the last.. four times I’ve left the house. But as of today it is gone, so. Goodness knows if it was a Migraine or something from an infection… The left side of my face randomly droops and grimaces throughout the day, so it’s possible some of the nerves in my face are generally under seige. I just hope whatever “that” was, won’t happen again anytime soon.

I’ve otherwise been having a lot of arm weakness, which is no doubt “punishment” from the M.E. after typing my last entry, however there’s something else there that’s prolonging it. So they’re recovering, but something is irritating them. Today has been quite profound as far as feeling.. I don’t know how to describe it. I’m unsure if the majority of it is from going “out” yesterday, or if there’s some type of infection flare (I did randomly start crying today…) but, I feel almost as if I don’t have enough blood in my body. I’d bet my left foot I’m in one of my anemic stages right now. It’s an.. internal weakness.. that I often feel when I’m hospitalized. I’m not sure what to call it. It’s not fatigue, it’s not weakness (then again, I tend to define weakness in muscular terms), it’s.. the “are you sure I’m still connected to my body? because I don’t think I have enough energy to even move” feeling. I’ve also had to frequently take deep breaths (which I can do, so it’s not like air hunger), so that’s more support for the anemia theory… Bartonella destroys red blood cells, you know, and I can’t help but wonder, if the bartonella is in the blood cells and then the antibiotic kills it… What happens to that red blood cell, then?

My legs are getting slightly more able during the day, so taking the Rifampin doesn’t automatically mean mandatory wheelchair anymore. So yes, legs aren’t as weak, arms are very weak (and my right one has had intermittent numbness again, how unusual), crazy headaches, weak breathing with feelings of extreme internal weakness, random dizzy spells (with that strange feeling in my head like I get sometimes), and mild amounts of arrhythmia (so the “dizziness” may actually be from that). Speaking of  my chest, my ribs keep having stabbing pains in them, along with soreness around the thymus gland. I’m not suggesting that it’s coming FROM the gland, but to get an idea for my future reference, it’s around there.

Yup. I’m definitely in health-journal mode.