Having determination does not always equal curing a disease.

I don’t think some people are prepared to hear that determination alone is not enough to beat a disease. You can do everything right and still get worse, and it’s not your fault. You can’t say being motivated and refusing your circumstances (“I got better because I wouldn’t settle for anything less!”) is going to get everyone well, because it gives those who aren’t so lucky the delusion that they’re somehow responsible.

This post is for you.

The people who stay sick still matter. The people who die from their disease still matter. It is not your fault.

No one talks about these things out of fear of being attacked for it… I guess it’s a lesson to be learned by those who have that journey. As Oscar Wilde said, “Nothing that is worth knowing can be taught.”

a rainbow at night

Guest blogger: “It is healthy to talk about what you are going through.”

I’m here to make another installment to my Life Lessons section, but this time, with the words of a very special guest blogger. And I don’t say very special because they are well-known, famous, or something like that. But they are, in my opinion, one of the most amazing people to exist. My dear friend–who has a birthday today, no less!–who has impacted my life in more ways than I could count, wrote this several days ago, and I thought it was way too important not to share (especially since they agreed to write something for you all sometime this year!).

I’m really tired of “not talking about your illness” equaling “being a stronger person.”  No.  It is healthy to talk about what you are going through. 

Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.  Illness, disability, old age, and dying are a part of life.  It is natural.  It has been with us forever. 

Every single human being that has ever lived has dealt with it in some fashion.  Every single human being has died, or will die.  If they live long enough, those still among us will will watch a loved one die.  They will get older.  They will encounter disability in themselves or others.  They or somebody they love will get sick. 

For me, it would be unhealthy not to talk about something so inevitable and universal. 

I talk about my illness.  I am sure it makes some people uncomfortable and has driven some people away.  But it affects nearly all of my life right now, and I see no reason to pretend like it does not.

– the author of Black Cat Saturdays

 

No one should be made to feel like they have to deny a part of themselves or a crucial part of their life in order to win the affection and/or acceptance of another. As with anything in life, it’s all about balance. We have to find a middle ground between talking about what we are going through, honestly, and yet not being consumed by it. I know people on both extremes–those who never talk about it, and those who talk about absolutely nothing else. It is detrimental either way. The person who never talks about it–perhaps to keep people around, not make others uncomfortable, or stay in denial about their own circumstances–ends up feeling cheated, abandoned, and can lose self-respect. The person who talks about nothing else, forgets who they are entirely, and sees themselves only as “the person with such-and-such disease.”

But we are more than sick, or disabled, or terminally ill. We still exist, and we still have purpose and love to share. But in order to get to that place, we have to realize–and hopefully be accompanied by people who realize this, too–that we are also people who have to grieve in a healthy manner, who have to express ourselves as we go through this part of life, and it’s not our job to make sure everyone else stays comfortable while we do it.

As written above, we will all go through these things at some point. It’s just that we, who are already going through it, simply don’t have the time or extra energy to spend worrying about someone else’s opinion of how much we’re “allowed” to share before they feel inconvenienced…

a rainbow at night & black cat saturdays

I feel the need to share again: “The Silence of the Dying,” by the Sara Douglas.

July IGeneX results.

So a few weeks ago my IGeneX results returned to me.

  1. My Lyme test is more positive. This is actually good, believe it or not! As you improve and your immune system is less burdened, you get more positive results. I now have bands 31, 34, 39–the most Lyme-specific of all, 41, and 58. I’ve never had band 58 before, and I’m not happy about it because this means the bacteria are now resistant to my fever response. This might explain why I don’t even get fevers during my Lyme flares, anymore. (See, this is your proof that they evolve.) And my band 41 now has THREE stars next to it… I didn’t even know you could get three stars! I.e., a very very positive band! I applaud my immune system for its abundance of “+” marks, whereas I’m usually only capable of “IND” bands, the very weakest positive response.
  2. NO Anaplasmosis. Also good! (Tested via IFA.)
  3. NO Babesiosis. VERY good! (Tested via IFA and FISH.)
  4. Possible exposure to either Erlichiosis (HME) or (and most likely) Rickettsia. I’m thinking Rickettsia felis–aka flea-borne spotted fever–is the most probable suspect, given my history of hundreds of catflea bites and the fact that I had a changing spotted rash on my feet for two years afterward. Good news is, Rifampin can treat it, which I’m already on, so. My results are technically showing exposure to E. chaffeensis, but it says on the paper it can cross-react with at least four other types of bugs, including all Rickettsia species.
  5. I FINALLY SHOW EXPOSURE TO BARTONELLA. So take THAT, fifteen other insensitive tests from Quest and Labcorp that said I never had it!!!

Both the Erlichliosis/Rickettsia and Bartonella tests were in the middle category of either resolving or active infection, depending upon your levels and symptoms. My bartonella score was basically borderline positive, but both results came from my IgG, i.e., where I have my immunodeficiency (PIDD, and the reason most of my tests don’t show positive). Which means, if I weren’t immunodeficient and had normal levels of Immunoglobulin G, the scores would have been higher, possibly high enough to surpass the “bordeline” category. Or at least, my bartonella result would be. Regardless of anything, I do have the bacteria antibodies. I am fighting it.

If I don’t have the Rickettsia…well I just HOPE I have/had that one instead of the Ehrlichiosis! It must be the easiest to treat, because I no longer have the spots on my feet and the IgG for it was the lowest it could have been without being negative: Anything below 40 is negative, and I got.. a 40. Accommodating for my PIDD, and it’d probably be slightly higher, but this is nothing to worry about, I don’t think. With no obvious symptoms and such low levels this is most likely in the “resolving infection” category rather than “active infection” (in contrast to the bartonella whose titers are much higher and symptoms still active). Perhaps it is also low because of the cross-reaction factor? I was tested for E. chaffeensis, so if I tested specifically for Rickettsia antibodies, would it be slightly higher? Who knows.

But mainly I am so, so elated that we finally have something that says, Look, the bartonella is here, in contrast to the.. dozen or so other tests I’ve had in the past two years that said I never had it. Pfft! (Only in the chronic illness circle are you happy when tests show something is wrong.) I wish I would have gotten tested for this via IGeneX, sooner! These are my results after six months of Rifampin and Zithro–I only wonder what they’d have been in the beginning!

And by the way. The bartonella species I tested positive for was B. henselae–the cat scratch disease variety! I wasn’t even tested for B. quintana, the type that does the classic five-day fever cycle like I have… So, based upon my symptoms and flare cycle, there’s a high chance that I actually do have them both like I feared last year. (Cat fleas can carry up to five different species of bartonella.) Speaking of that, if I’m correct, B. henselae follows more of a seven day cycle, or at least a less-defined flare cycle than the B. quintana strain… So there: Maybe the bartonella seriously is the reason my Saturdays are so “inexplicably” and yet, reliably, messed up recently…!

As far as how I feel about the results… In a sense, I’m a little relieved to find out that I’ve had two strains of bartonella, and one other resolving (most likely but unconfirmed) Rickettsial infection. It helps me better understand why I became so unimaginably ill within such a short time frame.

I’ve always thought, How on earth can two infections at once bring me down that quickly, even if I did have M.E…. But basically (already having the Lyme for two years, albeit unknowingly) within a matter of two months, I got four infections at once: The bartonella and rickettsia strains from hundreds of catflea bites, and Mycoplasma pneumoniae from the children of a family that came to stay at my house during a bad storm. It makes me think that, even though I was already steadily going downhill with the undiagnosed Lyme disease, at least it did take more than two additional bugs to bring me to almost completely bedridden within eight months.

This is also proof that a negative test means nothing. People need to realize this fact, above all else. We do not have adequate testing–your levels have to be very obvious and you need to have a functioning immune system in order for the routine tests to work. Those are the conditions they were designed to work under, and even then, the CDC admits their inaccuracies are very high. There is a REASON Lyme disease is the fastest spreading infectious disease in the United States.

If you’ve ever been diagnosed with MS, ALS, Parkinsons, RA, Lupus, CFS, or Fibromyalgia, please find an LLMD–Lyme Literate Medical Physican, the people who risk their lives to stand up to the infectious disease society and treat people who are dying–or someone else who completely undestands how common these tickborne (and fleaborne!) infections are becoming. Yes, all of those aforementioned illnesses can exist on their own, but far too many doctors unknowingly use them as catch-all categories due to their ignorance of infectious diseases such as Lyme disease and Mycoplasma. And even if you have M.E., you still need to be tested, because we are suspectible to infections that most people don’t even have to think about. (You’d be well off reading a pamphlet on having HIV, and how to avoid things–like kittens!–that are considered high risk for the immunocompromised.) Lyme can also cause false positives on autoimmune tests (such as ANA and ESR), so even having “confirmation” such as that is no merit to say you’re safe. Everyone owes it to themselves to make sure they don’t have a treatable infection like this; especially when it can and does lead to death if not treated.

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

Symptom recap, middle of Lyme week.

Let’s see. What do I need to update about… Ah, who am I kidding, this is going to be one big ramble!

I’ve been re-tagging my primary blog, the one that used to serve as my health diary until I decided to switch all those things to here and make it public instead of invite-only. That old one is still so useful to me. What’s even more useful are my daily symptom charts… But they are so taxing to fill out, I stopped doing them out after just one week on antibiotics. I used to be able to, but this time around it’s just impossible to keep up.

My intestines are no longer giving me any problem, so whatever was happening has resolved itself. I’m having daily air hunger ever since my Lyme flare started, and in fact, after skimming through my entire prior blog the past two weeks, I’ve realized my air hunger nearly always coincides with my Lyme flares (that may or may not be distinguishable from the mycoplasma pneumonia; I have yet to figure out if that infection has a pattern or not). Nonetheless I am in my typical Lyme week, and having air hunger. I am slighlty comforted by this, because it makes it less likely that this is happening because of babesiosis, something that I don’t think I have but won’t really know until we get rid of these other things. Also, I’ve realized repeatedly that oxygen does not help air hunger. It only makes it slightly less severe, but unlike for normal shortness/gasping of breath, it doesn’t truly relieve it. There must be some neurological component to it, I think, because my vagus nerve is also experiencing problems for the past several days. This happened in responsed to treatment last time as well.

For some reason Lyme disease have an affinity for the facial nerves (most commonly presented as bell’s palsy), I suspect because they are the closest connection to the brain, where the bacteria primarily reside. Except for the vagus nerve, that is, which not only goes from the brain to the face, but all the way to.. your stomach, I believe? It controls things such as heart rate, blood pressure, and gag reflex, and reacts to temperature changes. (Recall the term “vasovagal syncope”?) The last time I was in treatment I became unable to drink anything cold for three months–even water had to be heated to room temperature! And I was consistently nauseated for a very long time, which was only alleviated by an anticholinergic that happened to be used to treat a hyper vagus nerve. So now, something of that sort is happening again, and I’m unable to swallow a lot of my pills. There is a lot of synchrony involved in swallowing, and things just aren’t lining up. Either I just can’t initate the action, or I do manage to swallow but my throat spasms halfway through, or I for SOME reason try to BREATHE in the middle of it, which has forced me to hold my nose so that I don’t sporadically inhale! ‘Tis not been pleasant, to say the least.

My temperature made a spike to 99.6 on Thursday when I began taking my antibiotics at regular intervals (Rifampin 300mg + Doxycycline 100mg, both twice a day), and after that,  it went down to 98.9…where it has stayed ever since. Every now and again it’ll go to 99.2, and then drop back down to 98.9. Then maybe another slight jump, and back down. But it basically hasn’t changed: Before I go to bed it’s 98.9, when I wake up it’s 98.9, when I take it at random intervals, it’s 98.9. I’ve tried two thermometer and even asked my mother to be a control subject (98.2 for her), so it’s definitely something within me. It can’t be my menses because you still experience a normal temperature fluctuation, just with a higher baseline. I.. have no fluctuation, except for small spike after I take my antibiotics! But I’m almost a little glad about this because when your temperature lowers is when the bacteria can most-easily replicate. Maybe now that I’m on Doxycycline, whose (haha I speak as if it’s a person) entire purpose is to stop bacteria from replicating… Yeah.

I found out Rifampin can lower your Vitamin D levels, so I’m glad I take extra Vitamin D every day anyway. :|

…OH. Another thing bothering me more and more is food texture. Right now my diet subsists almost entirely of whole grains, raw fruit and vegetables, eggs, and Ensure drinks. Occasionally I eat chicken.

All things considered I think I’m dealing pretty well being on both antibiotics… Ah, well, of course I have excruitating headaches come nightfall (Lortab-requiring) but that’s a given. Headaches are my most prominent infection symptom and my most prominent herx reaction. I’m not having as much blatant dystonia lately as I am more parkinsonism symptoms. (I qualify so closely for a diagnosis of a “dystonia plus syndrome” I’ve actually considered getting evaluated by a movement disorder specialist to see if I’m showing signs of anything genetic; my dystonia first appeared in my left foot about four or five years ago.) But yes, recently there is more trouble with tremors, difficult initating and stopping movement, freezing movements, slow movements. Again, my facial spasms have died down. I still have the head shaking, but not as severe. I’m currently trying to determine whether it’s my neck or if I’m having nystagmus, which is where your eyes move and your head shakes to compensate. I know my left eye dances and has a mind of its own, especially during Lyme flares… So that may be it. Whatever the origin, it’s not as severe. My feet are beginning to hurt again… Is it time for a bartonella flare soon?

Speaking of which, I’m concerned for the end of this month again. Maybe not this next one, but the one after it, the dreaded “bartonella flare after the Lyme flare” that’s been repeatedly responsible for trying to hospitalize me. I’m only concerned because the chance of it happening becomes more frequent when I have stabbing lung pains (I’ve had pleurisy twice in the past eight months) and air hunger in the week prior… Both of which I’ve had this week. I’ve previously speculated that the mycoplasma might have something to do with it, too, since this happens every other month and mycoplasma replicate very slowly… But we’ll see. I haven’t been coughing yet–… Oh, wait. Yes, I have been, a lot… Ah, crap. :|

Well, hoping this is all just herxing and nothing akin to an ominous sign…! (If I start having random allergies and chest pain, then I’ll begin to worry.)

Oh, but speaking of headaches (which was a couple of paragraphs ago I think), since I’ve needed Lortabs nightly and had no arm numbness, I think that kills the medication-reaction theory about my arms randomly going numb.

My legs have been weak, but again, Lyme, so there’s nothing too unusual there; just need to mention it. I’m having arrhythmias as well but after repeatedly mentioning it during Lyme flares, I think it’s the cause of those, too…

And this concludes my recap of the symptoms I’m currently experiencing. :)

a rainbow at night

♪ So I’m calling angels; help me tonight ♫

Okay. Ability scale checkpoint!

Today is a relatively good day, and I would say I am at about 15% physical ability, 20% cognitive ability, and.. somewhere around 10% symptom severity. This is improved from December 13th, when I was at 5% physical ability; the others haven’t changed. I think I owe that to the wheelchair, honestly! Though it was an incredibly difficult step to take because of what it represented, it’s not so hard to deal with now that I have the hope of actually getting out of it, of it being a temporary thing, instead of “this is where I am indefinitely.” I’ve also been smarter with my muscles and am taking Ubiquinol daily, which I know I keep repeating is very useful. Really, anyone with fatigue or weakness (or heart failure) should be on it. Dr. Burrascano even recommends it to people going through Lyme treatment, calling it essential, because these infections infiltrate the mitochondria (Lyme), can destroy our red blood cells (Bartonella and Babesia), and cause exercise intolerance (Babesia). Tie all of those together, and your cells really need some help!

I usually don’t talk about my personal life or activities here but this might be relevant. Yesterday I decided I wanted balloons. Like, with helium? And I’d get some sparklers while I was at it. I had no reason for it, but since I’m getting my new medicine tonight I figured I’d make it because of that. (Yes, I really am the type of person who will go and buy balloons and sparklers “for no reason.”) Maybe I was subconsciously wanting to celebrate? And finally I decided I wanted fresh flowers, too. So today that’s what I’m doing! Mum is taking me out at some point after noon and I shall return with said balloons, sparklers, and assorted fresh flowers. :D

…And then I will sparkle and float and be colorful on the last night of my sanity!

The one thing that keeps going through my head is Isaiah 41:10. “Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, I will help you, I will uphold you…” I just wonder, can He protect me from myself? We’re about to find out. That is my prayer.

It’s not the physical suffering I fear, for I’ve been through a lot and know what to expect; I have a pill for just about everything that could happen. It’s not even that I might start arguments with people because I’ve warned everyone that starting treatment for the bartonella is bound to make me a little nutty. I’ve told-off best friends, thrown bottles at my family, and slung chairs across the room; I’m pretty sure it’s obvious when I’m not myself and that anything is possible. But what I do fear, is what’s going to happen to me, mentally, that I won’t be able to control. I’ve had the displeasure of realizing that the Zoloft I take for the OCD and PMDD, does not matter when I am having a bartonella flare, so how can it make a difference when I’m having a bartonella herx? I just don’t want to get to the point where I am so out of my head that I start staring at my box of medications, and thinking… I usually try to stay around someone else in the house when I’m having a dissociative episode, to remind me that I am actually awake and not dreaming, or whatever else I might be thinking during a bad flare or herx, but how do you stay around people when you also run the risk of being verbally abusive?! We’ll just have to see what happens, I suppose. Maybe it will be easier than I’m predicting, somehow.

I’m also concerned about what it will do with my other symptoms. Once the bartonella is subdued, will Babesia symptoms come out? Will the Lyme disease further show itself? Could I have another problem with candida overgrowth (or a worse yeast, such as c. difficile) and have to stop treatment prematurely, ending up in the hospital again? Or will I end up in the hospital from the herx itself? These are all things that run through my mind…but I don’t focus on them because they’re out of my control; what really needs my attention is what I can do. It doesn’t mean I don’t think of them, though!

Did you know C. S. Lewis (The Screwtape Letters, The Chronicles of Narnia) had Trench fever? That’s what they call infections caused by the bartonella quintana species, which is at least one species I have, definitely. Also, I had no idea pain on moving the eyeballs was a symptom of it: Now it finally makes sense as to why I have that so much. I could never figure out what’s causing it! I even contemplated posting about it, but it’s an awfully odd symptom, no?

I’m not sure how much I’ll be updating when I start treatment. I figure either I’ll do it a lot to keep myself sane or.. not a lot, to save my poor arms. If last time if anything to go by, it took a week or two before the severe headaches caught up with me (but I already have those?!) and then about a month before the exhaustive weakness settled in from all the toxins. )))): I wasn’t on my olive leaf extract at first, though, so hopefully being on it this time will mean less of that!

My symptoms lately… I can’t think of anything out-of-the-ordinary to report. I’ve just been getting a lot of rest since my last outing. And I mean real rest, not pseudo-rest. Oh, but my short term memory is having another dry spell… Which is possibly why I can’t remember much about my symptoms! Aha. OH, but I did think it was October for a full day! I wished my friend a happy anniversary, but I couldn’t figure out why her January anniversay was suddenly in October… So I finally just asked, and she reported to me that, it is January! Why, of course it is, I knew that…

All of 2010, I thought it was 2011. Now 2011 is finally here and I think it’s October 2010 — my goodness! Part of me wonders how long I would have thought it was October had she not said anything! (It didn’t help that the weather was very much like Autumn…)

Edit: Got them!

a rainbow at night