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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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

Viruses, more ER visits, and the MTHFR test

I’ve wanted to make some posts, but a few things have set me back. The holidays, unexpected family visitations, and a virus.

Usually I’d go into extensive detail of dates and symptom progression, because the nature of my “viral” infections are questionable as to whether it was an acquired seasonal bug, or a flare-up of something I already have. This was definitely something I caught.

It started with a “feels like I’ve swallowed glass” sore throat and proceeded to cause symptoms of every seasonal fluke known to man…except a cough, THANK GOD! The whole ordeal lasted nine days, if I remember correctly. The first four, my body was trying to figure out what was happening. Aside from feeling especially like hell with glass-throat, I couldn’t tell anything apart from my regular symptoms. And then it abruptly realized I had a bug and went into “attack it!” mode, which sent me to the ER the first time, with rapid-onset fever and of course, dehydration.

The second ER visit was due to intractable head pain. Let’s put it this way: I usually take my pain meds twice a day? I was taking them every four hours, they were only barely working, and I had to set an alarm to wake me up while sleeping to take them or I’d wake up sobbing. It turned out that all the.. I’ll say trauma, of the added stress triggered my occipital neuralgia. Once I figured that out, I was able to treat it, which is to say, use the combination of meds and heat I know to be effective in calming the storm until it passed.

I always say I’d rather have a full-blown migraine for a week than an attack of occipital neuralgia for even one day. They gave me hydromorphone. Twice. (I’ve said to “normals” that they gave me morphine, because everyone know what that is, but they actually gave me Dilaudid, which is about three times stronger than morphine.)

A funny thing happened as I recovered from this. My immune system apparently got distracted from attacking me, and I had much-reduced pain and no vasculitis for about a week. Then it remembered who I was again, but I enjoyed those “days off” from everything!

I haven’t been on ANY of my vitamins or supplements since it started, but another funny thing: I can’t tell any difference. This is a complete 180 from when I was in treatment and I could tell which supplement I forgot by which symptom popped up within the next two days–arrhythmia if I’d forgotten my calcium, a migraine if it was my magnesium, chest pain if Co Q-10. Randomly, but perhaps importantly, I’m REALLY REALLY glad I was taking high-dose Vitamin C in the month prior to that virus finding me! That might be why it took four days to really settle in. (Vitamin C doesn’t help much if you’re healthy, but if you’re immunocompromised it can make a big difference.)

My best guess is that, my body doesn’t need as much help since I am not in treatment? I’d like to think it’s a good thing that I can now survive without supplementation, and I’m not planning on going back on everything unless necessary. I know I need magnesium to preserve my nerve function. And the Co Q-10 for the M.E.; I’ve been having chest pains galore from all the activity sans supplementation to help my muscles recover. And possibly my B-complex, also for nerves, but I’m going to hold off on that until I get the results of this new test I’m having to see if I have the MTHFR gene mutation. (Yes I am aware of what that looks like an abbreviation for, and yes, I laughed.) It can prevent the body from detoxing properly and also cause hyperhomocysteinemia (can we just call that hyperhomo? that’s funny, too) which can result in vascular problems and strange reactions to B vitamins… I have all of that! But of course I have symptoms of everything, so I can’t get TOO excited. It’s a gene mutation genetic polymorphism so it can’t be cured, but it can be managed if we know I have it.

Since I don’t know the rate at which I’ll be posting, I’ll just give you a preview. I’m going to talk about my New Year’s resolutions, how taking a one-month break from Twitter affected me, and how Christianity never helped me deal with the reality of chronic illness. Eventually I will also describe what my pain is actually like, because chronic pain means different things to different people, and I’d like to talk about my version.

See you soon!

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

Second Internist vist: Dehydration caused by infections

I’m in that awkward stage between activity and crash, where your brain just keeps running… So throughout the night I’ve typed THIS.

“Today’s” second appointment with my Internist/Infectious Disease doctor was very productive. First off, my syphilis and HIV tests came back negative! Haha, so nothing cross reacted and gave him a false positive. :)

Second I need to mention, he’s under the impression I had “meningoencephalomyelitis” in 2002, instead of having Myalgic Encephalomyelitis, now. One is a symptom that goes away, the other is a disease that doesn’t. But I didn’t know he thought that until I got a copy of his notes on the way out the door. Now I wonder what on earth he thought when I kept referring to when I said “ME.” That, and, since he misheard me (I wasn’t able to fill out my own forms that first visit, so I didn’t get to write down my medical history), he wasn’t able to ask the crucial question of, “What is that?” and is probably under the assumption that there is no diagnosis for any of my symptoms, or *he* might think *I* think Lyme disease is causing all my problems… BLAH.

Regardless. All the tests came back negative for the things they routinely test me for, but I did find out one crucial piece of information from my bloodwork: My near-hospitalization was indeed caused by a more-severe flare of infections, and thus my rapid dehydration was definitely not caused by caffeine in any way. My hypothesis about dehydrating due to one’s immune cells needing extra potassium and calcium to fight infection, appears to have more evidence behind it.

My results showed elevated neutrophils and decreased lymphocytes, two typical findings when your body is fighting an acute bacterial infection (or in my case, right during an infection flare). These are also the same things that happened with my other two hospitalizations. My eosinophils have remained elevated, but dropped since September, though I am unsure if that’s just what they were doing anyway, or if they were low because my body was focusing on creating more neutrophils; an increase in one type of white blood cell will usually cause decreases in the others, such as the 40% drop in my lymphocytes, and.. also the 50% drop in eosinophils? Who knows. So, I’m not just imagining things. This stuff really is happening. Perhaps it even solidified what I was telling him, because I mentioned how I was having an infection flare on the day of the blood draw (I explained to him that I almost ended up in the ER after our first visit), before he showed me the results.

He asserted that Lyme disease DOES exist in the state I live, that he’s had patients who’ve suffered acute infection, and one patient who had it for nine months, but they both tested positive by PCR, so he was confused that my PCR was negative while my Western blot (IGeneX) showed positive bands. I explained to him that band 39 cannot cross-react with anything, so I’ve definitely had exposure to the bacteria, and also how chronic Lyme is a clinical diagnosis that you confirm with blood tests if you’re really lucky. In the end, he said I should restart the Doxycycline, but only once the candidiasis is no longer a problem.

He thinks I really need to go to a medical center, which is a place where I can have a bunch of doctors from various specialties look at me while in the same room together, so no jumping around from doctor to doctor every few weeks: They’ll all be in the same place, trying to figure me out. This is the FOURTH time I’ve been told this. The first was by my neurologist who was convinced I had some rare neurological disease (was he ever right…), and that a medical center might benefit me. The second was.. well, I’ve forgotten who, but I remember it being said.  The third was after/during my last ER visit in July, where [insert clinic name here] was ready to admit me and “figure out what’s wrong”; for the sake of managing my M.E. after all I’d been through, I declined. And now, this guy.

So I finally accepted the offer.

He even offered to personally condense my medical history for this medical center (I’ll have to explain to him about having M.E.! I’ll send him Dr. Hyde’s definition from his book if I have to!) after we told him my PCP’s office is notoriously.. well, incompetent, and can’t be expected to do it correctly. The man genuinely cares. In fact my only complaint is concerning his–yes, I’m afraid it does exist–all or nothing approach to how most infections work. Either I’m going to be completely incapacitated with tons of measureable signs, or completely fine, so the concept of chronic infection without the usual tests to confirm, doesn’t sit well with him. However, if he knew about my pre-existing condition and all that it implies, he might see that differently. Again, he thinks I just had “meningoencephalomyelitis” back in the day!

Last time he said he couldn’t think of any viruses to test me for, so I asked him to specifically test me for the ones I read about the most: HHV-6, EBV, and CMV. Tests using IgG/IgM would be useless, so he wanted to do the tests via PCR, which (theoretically, and in acute cases) would show current infection… Unfortunately these have a poor chance of turning up positive for chronic activation, even if I do have something stirring. He told the story of an unusual patient who was positive by PCR, yet negative by culture? That truly is strange. How can one test show current infection with an organism, that the second test says cannot be isolated? Shows how well they work, really. But hey, I’ll take it. Maybe I can beg the medical center to test me differently…

But that, I’m really not sure how I feel about, in general. It might just be plain useless. What can they really do for me? How will they know what to look for, when they don’t believe in or understand these two rare conditions I have, conditions about which most people have very inaccurate understandings, at best? I feel like going there and having them run more tests and not finding anything–because I doubt they will–would make my case worse, because then everyone else will think, “Well if they couldn’t find anything, surely it’s not there…” They can’t give me any reason for the things I have going on, yet they dismiss my explanations. (DO THEY NOT SEE MY BLOODWORK?! I CAN’T MAKE THAT HAPPEN BY WILLPOWER, YOU KNOW.) I loathe being forced to fit into their box. I do not fit into their box! But I also refuse to be one of those patients at whom they go, “Oh, look at that, she has bartonella infection in her heart and Lyme bacteria in her brain!” when I’m on the autopsy table. Not if I can help it. :\

He again seemed really baffled about the tachycardia and blood pressure problems. I showed where my cardiologist wrote “possible hyperbeta adrenergic-type syndrome” and claimed that I didn’t have dysautonomia, followed by the paper listing the actual tilt table test readings. The first thing he noticed was that I started out with a heart rate of 115, which is not normal. The first thing I noticed was that, adrenergic-POTS is made worse by caffeine, so I can’t have that type.  Telling him about how caffeine helps me seemed to spark this train of thought (which he spoke aloud) that ended in, my brain is not sending the right signals to my blood vessels about how to constrict and maintain my blood pressure, so my heart is having to compensate by increasing (becoming tachycardic), and in the long run that is not good at all. Eventually my heart cannot keep up. (I’m thinking that + the mitochondrial dysfunction might be why one of the three leading causes of death in M.E. is heart failure.)

Well, I think I covered everything. I won’t have to go back and see him unless I need to, like if the tests come back positive for any of the viruses and I have to ask about treatment. But that probably won’t happen. Now, onwards to tomorrow, where they once again extract an obscene amount of blood from me…but this time, with a twist! :D

a rainbow at night