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