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

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

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

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My First Real Post in Months: “Something” Has Happened

My birthday was in August and it was incredible. Full of love from friends and family and the amazing gift that I was alive to enjoy it. I thanked my Lyme doctor for helping save my life, because without his aid I know I wouldn’t have made it. The whole celebration affair took two days to get through because I didn’t want to exhaust myself–I tried!–but let’s just say, next year I shall ask for more assistance, especially in opening gifts because I did the closest thing possible to arm-murder for someone with M.E. The eustress still affected me profoundly, and the muscle relapse I experienced took me weeks to recover from. By mid-September I did finally get to a place where I was okay enough to start typing, replying to e-mails, et cetera, albeit at a much-reduced level. I think that’s when I made my last “real” entry… Anyway.

Since my last actual update I have been “officially” diagnosed with vasculitis, upped my Biaxin dose, then had to stop everything completely.

 

After a necessary car ride (read as: hurricane evacuation) put me in the sunlight for eight hours, my sporadically-present vasculitis-of-the-past-ten-years went into overdrive and has been bothering me daily, often severely, ever since. I have to avoid all sunlight and any temperature change…which I always have to do, but right now it’s even more important. I did get tests to see if anything autoimmune had been triggered, but the tests, ANA and the relatives, were all normal, so that’s good. I got the diagnosis of inflammatory vasculitis on the 6th of September, which ironically was two days after upping my Biaxin to twice daily instead of once daily, but the Biaxin was unrelated, since the problems began days earlier with all that sun exposure. My PCP told me all the weird quirks I’d been having–the INTENSE dizzy spells, the blurred vision, that the main vascular problems were in my hands and feet–were all related. She said it starts in the small blood vessels–ears, eyes, extremities–and spreads from there, and to manage it with ibuprofen, which for now, mostly works.

We want to avoid going on steroids if we can, because of how they suppress the immune system… But I’ve been off and on Nasonex (an inhaled corticosteroid for sinus inflammation; I don’t have allergies) and it’s such a catch-22. I always feel better when I’m on it, but it also messes with my immune system so that other problems act up. Sigh.

 

For the most part I had been feeling GREAT with the twice daily Biaxin, but when I’m down, I’m really down. I have no idea what to say about my general health status, otherwise. :\ I always get a bad flare at the beginning of the month because this is one of the bug cycles (I think the Mycoplasma, but maybe the Lyme–I have no idea, I just know it’s not related to my menses because that has no reliable pattern due whatsoever, and hasn’t for years). Well, this month’s flare was absolutely terrible because of being on the doubled antibiotic dosage–“herxapalooza,” as one of my friends calls it.

When I was on Zithro (biaxin’s cousin), there would be one day a month I’d have to stop my antibiotics and let the herx die down, lest I end up it the emergency room. I came very close to going this month, not because of the herx itself, but because of a Migraine that was almost completely resistant to treatment. All I had at my house was off-brand medicine and name-brand Treximet, the latter of which  I cannot take with my type of migraine (which I DID NOT KNOW–need to discuss this with my new neuro!). So it was bad. Bad bad. The aura began with an awful prodrome of Alice in Wonderland Syndrome on Friday (Sept 28th) and the Migraine began two days later on Sunday (Sept 30th). Another two days later it was gone, but I have been sicker than sick ever since.

I have stopped ALL of my antibiotics in an attempt to recover, and I’m planning to resume them Monday if I’m able. If not, I’ll give it another week like I sometimes have to do. It’s been four straight months since having to take any kind of break, so that’s good. I hope it’s just the herxing (my liver is fine, by the way!), because this is a little frightening.

I haven’t needed my wheelchair in months, so I put it in the closet. Then yesterday I went to stand up and almost went to the floor. I’ve had NO trouble walking in months. Now my legs are very weak. It just hits me in “episodes”–one part of the day I’ll be sort-of okay; the rest, I am useless. This would make sense if I were currently on antibiotics, but I am not!

I have been sleeping a ton, and in bed all day regardless, only getting up for the essentials like restroom. And the pain… Oh, the pain. A day or two ago–they all blend together at the moment–I couldn’t so much as roll over in bed without a dose of Vicodin. The “headache phase” (because that Migraine went on to irritate every surrounding nerve) has died down for the most part, but now I’m facing exhaustion, flu-like sickness, numbness in my right leg and foot, a bizarre action-related tremor in my left hand/arm that has actually been progressing instead of going away… I am hydrated but my blood pressure is poor, I am resting but my heart is weak… My heart has felt weaker the past several weeks, at random. I don’t know what that’s about (side effect of doubled Biaxin?) but my next cardio appointment is in November.

It’s just such a drastic change, and I was doing perfectly fine (relatively speaking) on the doubled dose of antibiotics until this hit… And despite being off of them, it doesn’t appear to be getting better yet, which is concerning when I’ve literally spent the past week in bed and usually this combination lends to me feeling better… Or at least, when it’s M.E.-related, this lends to me feeling better. I suppose, with that in mind, I should stop thinking of it in those terms, because even though the majority of my troubles the past month-and-a-half have been M.E.-related and those ARE improved with rest, these problems I now face probably are not M.E.-related, and therefore there’s no sense in thinking rest will help them.

Maybe I’m rushing things, or being impatient. I just wonder what happened that I’m taking so long to recover, and I hope this will all pass over without me being forced into a lower state of functioning in the mean time.

So as to my absence…! I have been doing mostly okay, seemingly doing much better–even starting to prepare my own meals!–until “this” happened.

a rainbow at night

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

All right. A real update! As far as I’m aware, the strange macular rash on my stomach is gone. For now.

My weekend sickness? Otherwise known as the 7 Day Flare? 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 awoke 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 woken up with simultaneous excruciating head pain (worse each day), 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 sprung 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 of the week for me, but it’s 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 most 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

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

Things are going good.

I haven’t been updating! Let’s fix that.

The 300mg daily dose of Rifampin is MUCH easier on me. I read somewhere (i.e., don’t quote me) that Rifampin strengthens the power of other antibiotics… So maybe that’s why I can handle the 600mg until anything is added to it? Regardless, I’m still herxing (some days the fatigue is fall-out-of-your-wheelchair unbearable!), but I’m not deathly ill or thinking I might need to run to the hospital once-a-week, like before.

Since that last migraine I haven’t had another, or even near another. For a while I thought the Topamax was causing me to wake up 4-5 times per night (though I still dream/reach REM-stage sleep, so this isn’t like Fibromyalgia), so I started taking it in the mornings. It still happened, so I think I’ve ruled that out. I’m still waking up several times a night, though. My experience with Topamax has been:

  • 1st week – Still lots of Migraines
  • 2nd week – Migraine “bursts” and auras
  • 3rd week – No more Migraines

Except when I introduce a trigger, of course. I like this medicine!

Yesterday was pretty bad as far as mental symptoms go, and it started the night before. I was very cynical and just generally.. foul. I kept distracted and didn’t ruin any relationships this time, aha. Last night my mentality became better and it still is as of today.

About two nights ago I woke up having a lot of trouble breathing. It was difficult to initiate swallowing again, I was short of breath, my tongue was numb, and my limbs were tingling and numb. That was about it, and it went on for about two hours… I wasn’t too unnerved, because I stupidly (yes, stupidly) ate a small meal right before I went to bed! Gah! But it was unusual, because for the past several days prior, I hadn’t had any dysautonomia problems. I’ve been splitting up my meals and eating them in small portions as to not divert too much blood flow, and up until then, it had been working.

Then this morning… I’ve woken up with slighly dropping left face, a numb & tingling left hand, and a numb & tingling left foot. I am incredibly dizzy. I’ve been awake an hour and a half and none of it has let up any. I assume I’m digesting something or another, because my right side is also experiencing numbness, but it’s not as constant as my left side. I actually fell over this morning (onto my bed, thank God!) because I couldn’t feel the toes on my left foot! Hopefully this will let up once the digestion stops…

Ah well. Time for the good news! Despite this being a usual Lyme flare period, my symptoms aren’t severe at all! No heat sensations in my left foot, and I haven’t even had the usual heart palpitations that occur! I did have upper spine pain, and a mildly severe headache (haha, and by “mildy severe” I mean a short burst of terrible pain that went away after about twenty minutes), but.. for the most part, things are lessened. (My bartonella flares have been milder, too, which is why yesterday’s snuck up on me. Normal 99.2 temp. I was also coughing a lot yesterday? Not sure if that’s signifcant. My feet started hurting the night the mental stuff began.) The only problem here, is that if I’m not having any arrhythmia, the holter moniter will have nothing to show! Ahaha. Oh, the irony. So I’m ditching my calcium and magnesium for the next five days in case it might help spark something; I’ll start it again before things get risky. I just hate the idea of wearing this thing for two weeks and it NOT showing anything!

Other good things are, I’m out of my wheelchair a lot more! I can usually go get the minor things I need, such as bottles of water or Ensure drinks, except for when.. you know, I can’t. And I still haven’t needed any oxygen supplementation. And after seeing my allergist/immunologist I found, I still have no allergies! Not a one! =) Part of me wonders how on earth I’ve avoided that… But nonetheless, I have, and it’s great. I was very short of breath in her office, and my toes turned blue (soon to be feet, if I hadn’t caught it), but propping them up on the exam table helped that, and my breathing, haha. Also, I’m able to type more now, but of course still experience the delayed muscle relapse. Baby steps!

 

a rainbow at night